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18 June 2007

Living with Parkinson's Disease

Challenges and Positive Steps for the Future

Report by Access Economics Pty Limited for

Parkinson's Australia


While every effort has been made to ensure the accuracy of this document, the uncertain nature of economic data, forecasting and analysis means that Access Economics Pty Limited is unable to make any warranties in relation to the information contained herein. Access Economics Pty Limited, its employees and agents disclaim liability for any loss or damage which may arise as a consequence of any person relying on the information contained in this document.

CONTENTS

ACKNOWLEDGEMENTS .................................. ..................................................................... i

GLOSSARY .......................................... ................................................................................. ii

EXECUTIVE SUMMARY ......................................................................................................... i

1. BACKGROUND ........................................ .................................................................... 1

2. PD IN AUSTRALIA ................................... .................................................................... 2

2.1 What is PD? 2

2.2 What Causes PD? 3

2.3 Symptoms of PD 4

2.4 Prognosis 5

2.5 Current Treatment Pathways 7

2.6 Recent Medical Advances 12

3. PREVALENCE AND MORTALITY OF PD .................... .............................................. 15

3.1 Prevalence of PD 15

3.2 Incidence of PD 21

3.3 Prevalence by Disease Stage 21

3.4 PWP Residing in Aged Care Facilities 23

3.5 Deaths Due to PD 24

3.6 Projections 27

4. ESTIMATING THE ECONOMIC COSTS OF PD ......................................................... 29

4.1 Incidence and Prevalence Approaches 29

4.2 Classification of Costs 30

4.3 Calculating Parameters 33

4.4 Discount Rates 34

5. HEALTH SYSTEM COSTS ............................... .......................................................... 36

5.1 Total Health System Costs 36

5.2 Health System Costs by Type of Cost 37

5.3 Health System Costs by Disease Stage 39

5.4 Additional Health System Costs 41

5.5 Summary of Health Costs 45

6. PRODUCTIVITY COSTS ............................................................................................ 49

6.1 Literature Review 49

6.2 Estimating Productivity Costs 53

6.3 Productivity Costs Summary 55

7. INFORMAL CARE COSTS ............................... .......................................................... 58

7.1 Number of Carers of PWP 59

7.2 Time Spent Caring for PWP 59


7.3 Estimating the Cost of Care 60

7.4 Additional Costs of Informal Care 60

8. OTHER FINANCIAL COSTS ............................. ......................................................... 63

8.1 Out-of-Pocket Expenses 63

8.2 Government Programs 67

8.3 Funeral Expenses 73

8.4 Other Financial Costs Summary 74

9. TRANSFERS .............................................................................................................. 75

9.1 Income Support for PWP 75

9.2 Income Support for Carers of PWP 77

9.3 Other Avenues of Financial Support 78

9.4 Taxation Revenue 79

9.5 Deadweight Loss of Taxation Payments and Administration 80

10. BURDEN OF DISEASE ................................. ............................................................. 82

10.1 Valuing Life and Health 82

10.2 DALYS and QALYS 83

10.3 Estimating the Burden of Disease from PD 86

10.4 Summary of Burden of Disease 87

11. THE ECONOMIC COST OF PD IN AUSTRALIA .............. .......................................... 90

12. SENSITIVITY ANALYSIS .............................. ............................................................. 95

12.1 Lower Bound Estimate of Prevalence 95

12.2 Upper Bound Estimate of Prevalence 98

12.3 Other Sensitive Parameters 99

12.4 Summary of Sensitivity Analysis 101

13. COMPARISONS ....................................................................................................... 104

13.1 Prevalence of PD and Deaths due to PD 104

13.2 Health System and Financial Costs 109

13.3 Burden of Disease 109

14. POSITIVE STEPS ..................................................................................................... 111

14.1 Improving Diagnosis 111

14.2 Accessing Health Services 113

14.3 Maintaining Employment 120

14.4 Supporting Informal Carers 123

14.5 Future Research 127

14.6 A Louder Voice 128

REFERENCES ................................................................................................................... 129

APPENDICES .................................................................................................................... 138


FIGURES

Figure 2-1 Biology of PD 2

Figure 2-2 Suggested treatment strategy for PD 9

Figure 3-1 Patients by Reasons for Prescribing PD-Drugs, Males, 2005 18

Figure 3-2 Patients by Reasons for Prescribing PD-Drugs, Females, 2005 18

Figure 3-3 Prevalence of PD, by Disease Stage 22

Figure 3-4 Age Distribution of PWP, by Disease Stage, Males 22

Figure 3-5 Age Distribution of PWP, by Disease Stage, Females 23

Figure 3-6 PWP in Aged Care Facilities, by Disease Stage 23

Figure 3-7 PD Deaths, Males, 2005 26

Figure 3-8 PD Deaths, Females, 2005 27

Figure 3-9 Projections of PD Prevalence 28

Figure 3-10 Projections of Deaths due to PD 28

Figure 4-1 Incidence and Prevalence Approaches to Measurement of Annual Costs 30

Figure 5-1 Health System Costs by Cost Component, 2005 38

Figure 5-2 Health System Costs per Person by Cost Component, 2005 39

Figure 5-3 Health System Costs by Cost Component, by Age, 2005 39

Figure 5-4 Pneumonia Health System Costs by Cost Component, 2005 44

Figure 5-5 Accidental Falls Health System Costs by Cost Component, 2005 45

Figure 5-6 Total Health System Costs ($m), by Age 45

Figure 5-7 Total Health System Costs per PWP ($), by Age 46

Figure 5-8 Total Health System Costs per PWP ($), by Disease Stage 46

Figure 5-9 Health System Costs by Cost Component, 2005 47

Figure 5-10 Health System Costs, by Who Bears the Cost 48

Figure 6-1 Rates of Retirement of PWP 53

Figure 6-2 Productivity Costs per PWP ($), by Age and Sex 56

Figure 6-3 Productivity Costs per PWP ($), by Disease Stage 56

Figure 6-4 Distribution of Productivity Costs 57

Figure 8-1 National Respite for Carers Program 70

Figure 8-2 Indirect Costs per Person ($), by Disease Stage 74

Figure 9-1 PWP Receiving Income Support (% of PWP) 76

Figure 9-2 Deadweight Loss of Taxation 81

Figure 10-1 Graphical Representation of DALYs and QALYs 84

Figure 10-2 Total DALYs (Years), by Age 87

Figure 10-3 DALYs per PWP (Years), by Age 88

Figure 10-4 Distribution of DALYs, by Disease Stage 88

Figure 10-5 DALYs per PWP, by Disease Stage 89


Figure 11-1 Financial Costs of PD, by Type of Cost 90

Figure 11-2 Financial Costs of PD, by Who bears the Cost 91

Figure 11-3 Net Value of Burden of Disease per PWP ($), by Age 92

Figure 11-4 Financial Costs per PWP ($), by Age 93

Figure 11-5 Net Value of the Burden of Disease per PWP ($), by Disease Stage 93

Figure 11-6 Financial Costs per PWP ($), by Disease Stage 94

Figure 12-1 Financial Costs by Type, Replacement Value of Informal Care 101

Figure 12-2 Sensitivity Analysis around Financial Costs 102

Figure 12-3 Sensitivity Analysis around Total Costs 103

Figure 13-1 Prevalence of Diseases and Injuries, 2004-05 105

Figure 13-2 Prevalence of Diseases and Injuries (+55 Years), 2004-05 106

Figure 13-3 Causes of Death, 2004 107

Figure 13-4 Prevalence of Neurological Conditions, 2005 108

Figure 13-5 Deaths due to Neurological Conditions, 2005 108

Figure 13-6 Health System Costs per Person, 2005 109

Figure 13-7 Disability Weights 110

Figure 13-8 DALYS per Person 110

Figure 14-1 Persons Employed in Selected Health Occupations per 100,000 Population 117

Figure 14-2 Average Cost of Care Models, Australia, 2005 124

Figure 14-3 Average Cost, Combined Care Packages 125

TABLES

Table 2-1 Risk Factors for PD 4

Table 2-2 Hoehn and Yahr Stages of PD Severity 6

Table 2-3 Determinants of Admission to Nursing Homes (Odds Ratios) 11

Table 2-4 Nursing Home Admission (% of PWP), by Age and Disease Stage 11

Table 2-5 Nursing Home Admission (Relative Risk compared to General Population) 11

Table 3-1 Reasons for PD-Drug Prescriptions 17

Table 3-2 Diagnoses & False Positives (%) 19

Table 3-3 Previously Undiagnosed Cases in Population Based Prevalence Studies 20

Table 3-4 Estimated Prevalence of PD, 2005 20

Table 3-5 Incidence of PD, 2005 21

Table 3-6 PD Deaths & Other Associated Causes of Death, 2004 24

Table 3-7 Underlying Causes of Death, 2004 25

Table 4-1 Schema for Cost Classification 32


Table 5-1 Health System Costs ($m in $2000-01) 36

Table 5-2 Health System Costs ($m in $2005) 37

Table 5-3 Health System Costs per PWP ($ in $2005) 37

Table 5-4 Health System Costs per PWP, by Disease Stage (₤) 40

Table 5-5 Health System Costs per PWP, by Disease Stage (€) 40

Table 5-6 Health System Costs per PWP (Ratio to Average), by Disease Stage 41

Table 5-7 Health System Costs per PWP, by Disease Stage ($ in $2005) 41

Table 5-8 Hospital Admissions of PWP 42

Table 5-9 Additional Health System Costs ($2005) 43

Table 5-10 Additional Health System Costs per PWP ($2005) 44

Table 5-11 Additional Health System Costs per PWP, by Disease Stage ($2005) 44

Table 6-1 Number of Bed or Restricted Days, by Disease Stage 50

Table 6-2 Lost Paid and Unpaid Days, per Six Months 51

Table 6-3 Retired or Unemployed Due to PD (% of PWP), by Disease Stage 52

Table 6-4 Summary of Productivity Costs ($m) 55

Table 7-1 Activities of Daily Living (% experiencing problems) 58

Table 7-2 Ability to Perform Activities, by Disease Stage (% of PWP) 58

Table 7-3 Carers of PWP, by Disease Stage 59

Table 8-1 Use of Mobility Aids by Persons with a Disability 64

Table 8-2 Use of Aids and Modifications by Type 64

Table 8-3 Use of Aids and Modifications (% of PWP), by Disease Stage 64

Table 8-4 Average Cost of Aids per Year, by Disease Stage 65

Table 8-5 Cost of Formal Care and Transport Costs (€ per PWP) 66

Table 8-6 Palliative Care Services Providers, 1998 67

Table 8-7 Specialist Palliative Care Recipients by Primary Diagnosis 68

Table 8-8 Federal Government Funding for Palliative Care 68

Table 8-9 NRCP Funding 70

Table 8-10 Carers Targeted under NRCP funding 71

Table 8-11 Distinctions Between the HACC, CACP and EACH Programs 73

Table 8-12 Indirect Costs of PD ($m), 2005 74

Table 9-1 Welfare Payments to PWP, 2004-05 77

Table 9-2 Total Cost of Income Support to Carers, 2005 77

Table 9-3 Summary of Transfers, 2005 ($m) 81

Table 10-1 International estimates of VSL, various years 86

Table 11-1 The Total Cost of PD ($m) 91

Table 12-1 BoD Study Estimates, 2005 96

Table 12-2 BoD Study Estimates, 2005 96




Table 12-5: Replacement valuation of informal care, unit cost components 100

Table 12-6 Sensitivity Analysis 102

Table 14-1 Financial Costs of Improving Access to Health Services, 2005 116

Table 14-2 Average Cost per Recipient of Different Care Streams, Australia 2005 124

Table A-1 PWP by Disease Stage, PD Medications Methodology, Males 141

Table A-2 PWP by Disease Stage, PD Medications Methodology, Females 141

Table A-3 PWP by Disease Stage, BoD Methodology, Males 142

Table A-4 PWP by Disease Stage, BoD Methodology, Females 142

Table A-5 Average Employment Rate and AWE in the Australian Population 143

Table A-6 Expected Retirement Age and Remaining Lifetime Earnings ($2005) 143


ACKNOWLEDGEMENTS

This report was prepared by Access Economics for Parkinson’s Australia, funded by an unrestricted grant from Mayne Pharma, Medtronic Australasia, Novartis Australia and Pfizer Australia, who had no part in the direction or findings contained in this report. Access Economics would like to acknowledge with appreciation the comments, previous research and expert input from:

� Rod and Dympna Irwin, Parkinson’s New South Wales,

� John McDonald, President, Parkinson’s Western Australia,

� Glenn Mahoney, Parkinson's Victoria,

� John Silk, Parkinson’s New South Wales,

� Bruce Shaw, Parkinson’s Australia,

� Dr Jim Slattery, Central West Parkinson’s Disease Research Group,

� Dr Mariese Hely and Dr Victor Fung, Department of Neurology, Westmead Hospital,

� Associate Professor George Mellick, Eskitis Institute for Cell and Molecular Therapies, Griffith University,

� Karen O'Maley, Department of Neurology, Royal Brisbane Women’s Hospital, Queensland,

� Laraine McAnally, Western Sydney Area Health Service, NSW Government,

� Janet Doherty, Parkinson’s WA,

� Theo Vos and Bridget Barker from DHS and School of Population Health of the University of Queensland,

� John Goss and Nick Mann from the Australian Institute of Health and Welfare.


GLOSSARY ABS Australian Bureau of Statistics

ADL Activities of Daily Living

AE-Demog Access Economics Demographic Forecasting Model

AEM Access Economics Macroeconomic Model

AF Attributable Fraction

AIDS Acquired Immune Deficiency Syndrome AIHW Australian Institute of Health and Welfare

ANAO Australian National Audit Office

ATO Australian Taxation Office

AUD Australian Dollars

AWE Average Weekly Earnings BEACH Bettering The Evaluation And Care Of Health

BoD Burden of Disease

BTE Bureau of Transport Economics (now Bureau of Transport and Regional Economics)

CACP Community Aged Care Package (Federal government program)

CAT Computerised Axial Tomography

DALY Disability Adjusted Life Year DBS Deep Brain Stimulation

DSP Disability Support Pension

DWL Deadweight Loss

EACH Extended Aged Care at Home (Federal government program)

FACS Department of Family and Community Services

GP General Practitioner GPRN General Practice Research Network

H&Y Hoehn and Yahr

HACC Home and Community Care (Federal government program)

HCN Health Communication Network

HIC Health Insurance Commission HSE Health and Safety Executive

IT Information Technology

MBS Medicare Benefits Schedule

MPTP methylphenyltetrahydropyridine

MRI Magnetic Resonance Imaging

NHS National Health Survey NINDS National Institute of Neurological Disorders and Stroke

NOHSC National Occupational Health and Safety Commission

NRCP National Respite for Carers Program


OECD Organisation for Economic Co-operation and Development

PADP Program of Appliances for Disabled People

PBS Pharmaceutical Benefits Schedule

PD Parkinson’s Disease PWP Person/People with Parkinson’s Disease

QALY Quality Adjusted Life Year

SDAC Survey of Disability, Ageing and Carers

US United States of America

USD United States of America Dollars VSL Value of a Statistical Life

VSLY Value of a Statistical Life Year

YLD Years of Life lost due to Disability

YLL Years of Life Lost due to premature mortality


i

EXECUTIVE SUMMARY

Parkinson’s disease is the second most common neurological condition in Australia but remains one of the least understood in terms of its cause. There is a lack of awareness in the health and general community of the challenges and needs of those suffering from this complex and disabling condition, as well as community stigma and constraints in the delivery of health and social support services. As a result, Australia needs to develop a greater, more positive public awareness and understanding of Parkinson’s disease (PD) among the general community.

This systematic and in-depth report has for the first time in Australia identified the extent and scale of the costs and disability burden faced by People with Parkinson’s Disease (PWP), their families and the community at large. The report also seeks to establish a number of constructive and pragmatic proposals, interlinking government, non-government, clinical research and community services to reduce discrimination and enable people with PD to remain in employment longer, continue living at home longer, require less hospitalisation and receive better medication management. In turn, this will impact positively on the rising economic and social costs of this disease.

KEY FINDINGS – THE CHALLENGES

Parkinson’s disease is a chronic, progressive, incurable, complex and disabling neurological condition. PD sufferers and their carers are confronted with major issues of disability including tremor (trembling in hands, arms, legs, jaw and face), rigidity and stiffness of limbs and trunk, sudden slowness and loss of spontaneous movement and impaired balance and coordination. However in many cases PD results in impaired speech and various mental health issues, such as depression and anxiety arising from both the impacts of the disease on individuals, the pathology of the disease and side effects of medications. Other symptoms include sleep disruptions, difficulty with chewing and swallowing and urinary and constipation problems.

It is conservatively estimated that in 2005 over 54 ,700 Australians had PD, of which 28,100 were male and 26,600 were female.

� PD usually affects people over 50 years, however people in their 30’s and 40’s are diagnosed.

� People of working age (15-64 years) comprise 18% of PWP.

� There were around 8,900 new cases of PD in 2005, and the median time from onset to death is 12.2 years.

� Sensitivity analysis indicates that between 53,200 and 72,200 Australians had PD in 2005.

� PD is a surprisingly prevalent condition – with higher prevalence than a number of diseases and injuries considered National Health Priority Areas (NHPAs) including:

�� Some cancers, such as prostate cancer, lymphoma and leukaemia, kidney and bladder cancer, and uterine, cervical, and ovarian cancer (and breast cancer, colorectal, stomach, liver and pancreatic cancer for people aged over 55 years).

�� Injuries such as homicide and violence, suicide and self-inflicted injuries, fires, burns and scalds, and machinery accidents.


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� Compared to other neurological conditions , PD has the second highest prevalence and number of deaths (exceeded only by dementia).

� Prevalence is expected to grow by 15% in the next five years (equivalent to a growth rate of 3% per annum), due to demographic ageing.

The total financial cost of PD per annum was around $527.8 million in 2005.

These are the real economic costs. In addition there were around $30.4 million of “transfer payments” – loss of tax revenue and welfare payments. These payments change the distribution of who bears the costs, and are also associated with smaller real efficiency losses from reallocation of resources, called “deadweight losses”.

The main cost components of PD were health system costs ($343.9 million), followed by deadweight losses ($82.8 million), productivity and carer costs ($60.6 million) and other financial costs ($40.5 million) such as aids and modifications to maintain independence, childcare and housekeeping costs and transport, amongst other things.

However the financial costs of PD are incurred over many years. While the median years living with PD is 12.2 years many live with the condition for well over 20 years. The lifetime financial cost of a PWP living with PD for 12 years (around $100,000) is on par with the average lifetime financial cost of cancer ($114,500 ). While lower than many childhood cancers, it is significantly higher than prostate and breast cancer (both around $64,000) (Access Economics, 2007).

In addition to financial costs, the burden of disea se – the suffering and premature death experienced by people with PD – is estimated to cost an additional 39,100 DALYs (years of healthy life lost), with 76% due to disability and the remaining 23% due to premature death. The net value of the burde n of disease was $6.3 billion in 2005.

PWP experience extremely high levels of disease bur den. Living with PD in the initial stages is considered more burdensome than blindness and deafness; living with PD in the intermediate stages is more burdensome than primary progressive multiple sclerosis and on-par with severe depression; and living with PD in the final stages is more burdensome than living with disseminated colorectal cancer, and on par with terminal stage cancer or severe dementia.

Consequently PWP experience more DALYs per person over their lif etime compared to many other diseases and injuries , especially since:

� PWP live with the disease for a relatively long time, compared to diseases such as cancer; and

� PWP are generally younger than people with dementia.

Thus the total economic cost 1 of PD was $6.8 billion in 2005.

1 The net value of the burden of disease plus the financial cost of PD.


iii

THE WAY FORWARD – POSITIVE STEPS FOR THE FUTURE

The analysis in this report underscores the potential to change the disease burden and composition of the costs of PD.

A national approach is needed that not only recognises the challenges of PD but also responds with a positive agenda for tackling those challenges. The cornerstone of the approach is a commitment to better health for PWP through prevention, care and cure.

Five key areas of a future national strategy are identified.

1 Timely, accurate diagnosis and cost-effective health interventions have the ability to reduce the immediate burden of the disease, help PWP maintain their independence, and ultimately slow growth in future costs of PD and enhance the quality of life of people with PD and their carers over the longer term.

�� Enhance collaborative medical research and training of doctors and nurses in relation to PD diagnosis, treatment, and knowledge of medication and hospitalisation protocols.

�� Increase access to PD specialist nurses and allied health professionals to levels recommended by the National Institute of Clinical Excellence in the United Kingdom.

�� Increase access to health services in regional and remote areas through Community Outreach Teams and smarter use of new information technologies.

�� Consider access to new, more effective pharmaceuticals for some PWP, such as dopamine agonists.

�� Develop a scheme that provides access to consumables and continuous infusion devices used to deliver PD medication (along similar lines to the National Diabetes Services Scheme).

2 Interventions that enhance employment retention and opportunities have great capacity to reduce production losses and thus overall costs of PD.

�� Build support programs to improve opportunities for patients to continue workplace participation, including workplace education and awareness strategies, in line with provisions for other chronic illnesses.

3 Support of their informal sector carers is vital to delay costly institutionalisations.

�� Maintain growth in Support Programs for Carers.

�� Improve access to respite (especially age-appropriate respite and services in regional and remote areas) and palliative care for PWP, and reduce the accommodation of young people in age-inappropriate nursing homes.

�� Improve workforce opportunities for informal carers.

4 Most importantly, ethical research into the cause of PD and other neurological conditions, together with research into prevalence, prevention and more effective treatment models holds the key to huge cost savings for those affected and for the community at large. Successful research offers huge economic returns and reductions in suffering for an increasing sector of the population.

5 Establish a Neurological Alliance in collaboration with other degenerative neurological conditions for a more effective voice in regard to national policy, as a forum for discussion and with equitable representation for participants.


iv

These positive steps would result in greater public awareness of PD, reduce disadvantage, improve community participation by PWP and their families and encourage the development of cost-effective solutions to improve quality of life for people with PD. In addition, they would delay institutionalisation and slow growth in the total cost of caring for People with Parkinson’s disease.

Access Economics 18 June 2007


1

1. BACKGROUND

Parkinson’s Australia commissioned Access Economics in February 2006 to investigate the demographic prevalence, economic impact and the disease burden relating to Parkinson’s Disease (PD) in Australia. The report focuses on both idiopathic and secondary PD.

The structure of this report is as follows:

� Section 2: Description of PD, its impact on the individual, and treatment pathways;

� Section 3: Prevalence, deaths and projections of PD in Australia from 2005-2025;

� Section 4: Description of the methodology used to estimate the economic cost of PD;

� Section 5: Health system costs;

� Section 6: Productivity costs;

� Section 7: Informal care costs;

� Section 8: Other financial costs;

� Section 9: Transfers (income support and taxation revenue impacts);

� Section 10: The burden of disease;

� Section 11: The total economic impact of PD in Australia;

� Section 12: Sensitivity analysis;

� Section 13: Comparisons with other health conditions; and

� Section 14: Positive steps.


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2. PD IN AUSTRALIA

2.1 WHAT IS PD?

PD is a disease of the Central Nervous System, affecting in particular the Autonomic Nervous System. According to the National Institute of Neurological Disorders and Stroke (April 2005a):

Parkinson’s disease is a progressive neurological disorder that results from degeneration of neurons in a region of the brain that controls movement. This degeneration creates a shortage of the brain signalling chemical (neurotransmitter) known as dopamine, causing the movement impairments that characterise the disease.

Healthy nerve cells, or neurons, in an area of the brain known as the substantia nigra (a pigmented area in the base of the brain) normally produce a chemical called dopamine. This chemical (a neurotransmitter) assists with transmitting and modulating signals between the substantia nigra and the next “relay station” of the brain, the corpus striatum, to produce smooth, purposeful muscle activity.

The functioning of the corpus striatum is dependent on maintaining a balance between all of its neurotransmitters (including dopamine and acetylcholine). When the neurons die or become impaired, the resulting loss of production of dopamine upsets the balance between the neurotransmitters. Consequently this causes the corpus striatum to fire out of control, leaving PWP with postural abnormalities and difficulties with the smooth execution of movement. The lack of dopamine also leads to excitation of the medial segment of the globus pallidus resulting in bradykinesia (see Section 2.3).

FIGURE 2-1 BIOLOGY OF PD

Source: www.parkinsonsdisease.com/pcp/pcp.htm

Idiopathic or Primary PD is defined by the presence of a certain symptom-complex (see section 2.3) but the cause is unknown. Idiopathic PD falls under the ICD-10 Category G20.

Secondary PD has similar symptoms to PD but the cause is known. These diseases fall under ICD-10 Category G21 (Parkinsonism in diseases classified elsewhere, such as Syphilitic Parkinsonism, fall under the ICD-10 category G22). Secondary PD includes:


3

� Malignant neuroleptic syndrome and other drug-induced parkinsonism: such as that caused by neuroleptic drugs (such as antipsychotics)2, antiemetic agents (such as prochlorperazine), gastro-intestinal anti-motility drugs (such as metaclopramide), anti-hypertenstive drugs (reserpine), and some calcium-channel blockers.

� Post-encephalitic Parkinsonism.

� Other secondary Parkinsonism such as that caused by environmental toxins, trauma, metabolic derangement, stroke and brain tumour.

Knowing the cause of the PD symptoms can inform the best course of treatment. For example, drug-induced Parkinsonism usually disappears within weeks to months after discontinuing medication; however symptoms can be permanent in about 10% of people (Lundbeck Institute, 2005). Although diagnosis, medical treatment and prognosis can be very different, both idiopathic and secondary PD have similar impacts on the individual. Needs are similar in terms of access to services and support. Consequently this study will examine the costs associated with both types of PD together3.

Other diseases , which have symptoms similar to PD (and consequently are often mistakenly misdiagnosed as PD or vice versa) but are not PD, include:

� Essential Tremor,

� Multiple System Atrophy,

� Progressive Supranuclear Palsy,

� Cortico-Basal Degeneration,

� Dementia with Lewy bodies4,

� Normal-pressure Hydrocephalus,

� Binswager’s Disease, and

� Vascular Parkinsonism.

Getting an accurate diagnosis of the disease informs the best course of treatment – misdiagnosis will often result in the use of ineffective drug treatments and unnecessary diagnostic testing.

2.2 WHAT CAUSES PD?

It is not yet known what causes PD. However, four possible causes have been identified (NINDS, April 2005b):

� Accelerated ageing – PD may be an acceleration of the normal, age-related deterioration of neurons. This is supported by the connection between antioxidants and PD and the fact that loss of antioxidative protective mechanisms is also age-related.

2 Most of these people suffer from psychosis, particularly schizophrenia, and so their needs are often quite different. 3 The extent to which this is fully possible depends on the definitions used in the individual studies themselves. 4 However in practice it is difficult to distinguish between PWP with dementia, and people with dementia with Lewy bodies.


4

� Oxidative damage – Free radicals are unstable and potentially damaging molecules generated through normal chemical reactions in the body. They are unstable and damaging because they lack one electron and thus attempt to replace this missing electron through reactions with other molecules (this process is called oxidation). Usually antioxidants protect cells from this damage. PWP have high levels of iron and decreased levels of ferritin in the brain which point to the existence of high levels of oxidation. Oxidative damage may also contribute towards the development of dementia (Christen, 2000).

� Environmental toxins – an external or internal toxin which destroys the neurons. Researchers have so far identified a number of toxins, such as methylphenyltetrahydropyridine (MPTP) and neuroleptic drugs, which induce PD symptoms.

� Genetic predisposition – 15% to 20% of PWP have a close relative who has also experienced PD symptoms. Researchers have found that mutations of the gene for the proteins alpha-synuclein on chromosome 4 and parkin on chromosome 6 results in autosomal dominant parkinsonism and autosomal recessive parkinsonism, respectively.

The only definite risk factor for PD is age – PD usually begins between the ages of 40 and 70 years and around 10% of cases occur before the age of 50 years (AIHW, 2000: 104). Other potential risk and protective factors are contained in Table 2-1.

TABLE 2-1 RISK FACTORS FOR PD

Increase Risk Decrease Risk Male gender Smoking

Caucasian ancestry Anti-oxidants in diet

Herbicide/pesticide exposure Early life measles infection

Rural residence Consumption of food and drink containing niacin

Higher intake of dietary fats

Conservative pre-Parkinson’s personality

Metal exposure

Family history5

Extreme stress

Head trauma

2.3 SYMPTOMS OF PD

The variety of symptoms and levels of severity can vary greatly from person to person and are often shared with other similar diseases.

The four major symptoms of PD are (NINDS, April 2005b):

� Tremor – trembling in hands, arms, legs, jaw or face. Tremor usually, but not always, begins in a hand and affects only one part or side of the body – especially during the early stages, although in later stages it may become more general. Tremor usually disappears during sleep or improves with intentional movement.

5 Especially in young onset PD (although confirmation of genetic links are complicated by inaccurate historical information about family members and many families have been exposed to similar environmental factors).


5

� Rigidity – stiffness of the limbs and trunk. The basic principle of movement is that all muscles have an opposing muscle – thus movement is enabled when one muscle is activated and the opposing muscle is relaxed. Rigidity occurs when, due to brain signals, the opposing muscle remains contracted when one muscle becomes active. Facial expression may also become rigid and inflexible.

� Akinesia and Bradykinesia – slowness or loss of spontaneous movement that is unpredictable in when it occurs and can be the most disabling symptom as it can severely impact on simple, every-day activities – thus reducing independence.

� Postural Instability – postural instability, impaired balance and coordination. Postural instability can cause PWP to have a stooped posture. PWP may develop a forward or backward lean and can fall easily – which can sometimes result in injury. In later stages walking may be affected – PWP may halt in mid-stride or may walk with a series of quick, small steps as if hurrying forward to keep balance.

Depression6, anxiety, dementia7 and memory loss are commonly experienced by PWP. This is partly because dopamine is involved in the development of these conditions, and partly because dopamine is a precursor for both adrenalin (epinephrine) and noradrenalin (norepinephrine) – two other neurotransmitters connected with these conditions. Furthermore serotonin is depleted in PD, also contributing to the prevalence of depression in PWP. Finally, some of the medications used to treat PD also result in these side effects.8

Other PD symptoms include (Helpguide, April 2005):

� Difficulty with swallowing and chewing;

� Speech changes;

� Urinary problems and constipation;

� Sexual difficulties;

� Skin problems; and

� Sleep problems.

2.4 PROGNOSIS

PD is a chronic disease (it persists over time) and progressive disease (symptoms get worse over time) with substantial disability. The stages of PD were classified by Hoehn and Yahr in 1967.

6 Prevalent in about 40% of PWP (Cummings, 1992) 7 Prevalent in about a quarter of PWP at any one time, however if the person lives long enough up to 80% of PWP may develop dementia (Aarsland 2003). 8 Expert opinion.


6

TABLE 2-2 HOEHN AND YAHR STAGES OF PD SEVERITY

Stage Characteristics I Unilateral involvement only, usually minimal or no functional impairment. Symptoms

include tremor of one limb, changes in posture, locomotion and facial expression.

II Bilateral or midline involvement without impairment of balance. Posture and gait affected.

III First signs of postural instability; significant slowing of body movements, individual has some restriction of activities but is capable of leading an independent life; disability is mild to moderate.

IV Severe symptoms: walking limited, rigidity and bradykinesia. Severely disabling disease; individual is markedly incapacitated and is unable to live alone.

V Cachectic stage. Individual is restricted to bed or a wheelchair unless aided.

Source: Scheife (2000: 956)

PWP do not necessarily progress from one stage to the next, but can drop down a stage during treatment or experience accelerated progression.

An Australian study followed 130 PWP over 15 years (Hely, 2005 and Hely, 1999):

� around 10% of PWP experience delayed progression (symptoms did not progress past Stage II over 10 years, but progressed over the following five years);

� of those diagnosed as Stage I or II at baseline, 73% had progressed to at least Stage III, 41% had progressed to at least Stage IV, and 13% had progressed to at least Stage V after 15 years (median time since start of study: 3.5 years, 7 years, and 6 years, respectively);

� of those diagnosed as Stage III at baseline, 74% had progressed to at least Stage IV, and 21% had progressed to at least Stage V after 15 years (median time since start of study: 4.5 years and 6.5 years, respectively); and

� the median time from disease onset to death is 12.2 years .

As the mean pre-study disease duration was 23.5 months, these findings equate to around 5 and a half years spent in Stage I and Stage II (45%)9, around four years in Stage III (33%)10, two years in Stage IV (16%)11, and the remaining 0.7 years in Stage V (6%) until death.

Thus a majority of PWP remain in the early stages of the disease for a considerable period of time before moving to the next stages of the disease or dying.

Overall, Hely (2005) found that PWP were 1.86 times more likely to die, and PD contributed to 52% of deaths. Pneumonia, particularly aspiration pneumonia, is the most common cause of excess deaths due to dysphagia and disordered respiratory mechanisms, particularly in the latter stages. However due to deaths from other co-morbid conditions, many do not progress to Stages IV and V.

9 23.5 months plus 3.5 years to progress to Stage III. 10 For people in Stage I or II at baseline the time between Stage III and Stage IV was 3.5 years, while for people in Stage III at baseline the time between Stage III and Stage IV was 4.5 years. 11 Based on people in Stage III at baseline.


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2.5 CURRENT TREATMENT PATHWAYS

2.5.1 DIAGNOSIS

There is no definitive test for PD – diagnosis is often based on medical history and the presence of the classic symptoms and signs of PD. Sometimes people are given anti-PD drugs to see if they respond, or other tests may be performed, such as MRI and CAT scans, to rule out other disorders with similar symptoms.

Even when symptoms become noticeable, it often takes two years before a definite diagnosis is made (Hely, 2005, and expert opinion). The presence of other diseases, such as dementia and general ageing can obscure PD symptoms and reduce the chance of an accurate diagnosis. Differences in referral habits and accessibility of medical services in regional areas can also impact the chance of being diagnosed.

Consequently, many PWP in Stage I are often under or misdiagnosed and the time from disease onset to diagnosis can be substantial.

2.5.2 TREATMENT AND CARE OPTIONS

Drug Treatment Options

Currently there is no cure for PD. The main treatment for PD is a selection of drugs that attempt to temporarily replenish or mimic dopamine in the brain. Drug treatment regimes are complex, with continual and slight adjustments in dosages, timing and combinations of drugs to reduce symptoms. Consequently adequate medication management is an important contributor towards reducing unnecessary disease burden.

Other effective treatments include physiotherapy, occupational therapy, speech therapy and surgery. There is also no standard treatment for PD:

The choice, intensity and timing of therapy are determined by a variety of factors: presenting symptoms, age, employment status, comorbidity, cognitive impairment and level of functional impairment. Choices must be individually tailored to a patient’s physical and personal needs. (Rubenstein 2001: 730)

This is particularly important in the case of younger-onset PWP.

Drug therapies for PD include (Rubenstein, 2001):

� Dopaminergic or Related Therapies

�� Levodopa is the main drug used to treat PD. Nerve cells can use this drug to produce additional dopamine (dopamine cannot be used directly as it does not cross the blood-brain barrier). However it can have significant side effects including nausea, vomiting, low blood pressure, involuntary movements (dyskinesia), restlessness and confusion. The ability for levodopa to reduce the symptoms of PD wears off over time and the level of symptoms may also change suddenly during the day due to responses to the drug – called the “on-off” effect.

�� Carbidopa or benserazide is often added to levodopa to delay its conversion to dopamine until it reaches the brain thus improving its effectiveness. It also reduces the side effects of levodopa by allowing PWP to have fewer and smaller doses. It also reduces the “wearing-off” effect.


8

�� Selegiline , also known as deprenyl, inhibits the enzyme monoamine oxidase-B (MAO-B) which metabolises dopamine in the brain. This delays the need for levodopa in the early stages of PD by 8 to 12 months (Rubenstein, 2001: 740) and can be used to boost levodopa (to reduce wearing off and on-off effects). Side effects include nausea, orthostatic hypotension and insomnia.

� Dopamine Agonists

�� Bromocriptine, pergolide, pramipexole, cabergoline and ropinirole mimic dopamine in the brain and can be used as an alternative12 (in the early stages) or to boost levodopa (to reduce wearing off and on-off effects) – thus delaying the start of levodopa therapy and the associated side effects. Alone these drugs are less effective than levodopa and their side effects include paranoia, hallucinations, confusion, dyskinesia, nightmares, nausea and vomiting. PBAC had recommended the listing of ropinirole on the PBS for PD in December 1997, but it was never listed as the sponsor decided not to proceed with the listing. In March 2006 PBAC rejected listing of ropinirole for the treatment of restless legs syndrome.

�� Apomorphine , given subcutaneously, is a very potent dopamine agonist (works within 3-20 minutes of injection), however it has a brief duration (half an hour to an hour) and must be taken with domperidone (an antiemetic) to counteract nausea (Chaudhuri, 1998). It is often used as a rescue drug for PWP who have found that the effectiveness of oral medications has reduced and their “on-off” fluctuations have increased, but is also effective as a continuous daytime subcutaneous infusion.

� Catechol-O-Methyltransferase (COMT) inhibitors

�� Tolcapone and entacapone extend the duration of the effectiveness of levodopa by inhibiting the enzyme COMT from degrading levodopa. Studies have shown that they have allowed a reduction of total daily levodopa dosage by 30% and reduce motor fluctuations and the end of dose “wearing off” effect (Rubenstein, 2001: 743). Entacapone is now available in a single medication with levodopa and carbidopa. However tolcapone was de-registered with the TGA due to liver side-effects in 1999.

� Anticholinergic agents , or muscarinic antagonists, block acetylcholine, the effects of which become more pronounced when dopamine levels fall. They are less effective than dopamine and dopamine agonists but can help to control tremor and rigidity. Side effects include dry mouth, constipation, urinary retention, hallucinations, memory loss, blurred vision, changes in mental activity and confusion. Agents include trihexyphenidyl hydrochloride, benztropine mesylate, procyclidine and ethopropazine hydrochloride.

� Amantadine is an antiviral drug which reduces symptoms of PD, although the impact wears off after a couple of months. Used in the early stages or to boost levodopa or anticholinergics. Side effects include mottled skin, oedema, confusion, blurred vision and depression (NINDS, April 2005b).

Figure 2-2 illustrates the typical thought process for deciding the optimum treatment of PD.

12 Dopamine agonists can delay levodopa therapy by 2 to 3 years (Rubenstein 2001: 741).


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FIGURE 2-2 SUGGESTED TREATMENT STRATEGY FOR PD

Parkinson's disease

Pharmacological

Neuroprotection with

MAO-B inhibitor

Selegiline 5mg at 8am and 12noon

Functional impairment

Yes No

Dopamine agonistsi. Non-ergot alkaloids

- pramipexole Levodopa

Dose ↑ - ropinirole - combined with carbidopa Dose ↑

ii. Ergot alkaloids or benserazide

- pergolide

- bromocriptine

- cabergoline

Combine therapyDopamine agonist

+ levodopa

+COMT inhibitor as adjunct to levodopa (Entacapone)Apomorphine as adjunct to levodopa or monotherapy

Unacceptable control with medical therapy - consider neuro-stimulation, surgery, pallidotomy,

glial cell line - derived neutrophic factor,foetal - nigral transplation

Speech TherapyOccupational Therapy

Amantadine

Nonpharmacological

Nutrition

Anticholinergics

Physiotherapy

Continue to monitor

Education

Support

Exercise

Possible neuroprotection withMAO-B inhibitor (Selegiline)

COMT = catechol-O-methyltransferase, CR = controlled release, MAO-B = monoamine oxidase B.

Source: Rubenstein (2001)

Other Therapeutic Options

Other therapies for PD include:

� Surgery – Surgery is often reserved for PWP whose symptoms can no longer be managed medically. Procedures include neuro-stimulation (see Section 2.6), thalamotomy and pallidotomy, where a probe is inserted and destroys a small part of the brain (lesioning).

� Physiotherapy – Physiotherapy or muscle-strengthening exercises are often used to help improve mobility (especially balance), gait problems, flexibility, general fitness, and muscles used in speech and swallowing.

� Speech Therapy – PD can significantly reduce an individual’s ability to communicate with others through the combination of speech disorders (dysarthria) and the reduction in visual cues, such as facial expressions and hand gestures. This causes difficulties in using a telephone or talking to strangers, thus increasing social isolation and depression. Speech therapists can assist in reducing dysarthria through behavioural treatment techniques (drills and exercises) focusing on pitch, volume, respiration, voice production and intelligibility (Deane, 2001a). Therapists can also provide careful assessment and diagnosis of swallowing problems (dysphagia) and advise on swallowing technique, exercise and may offer dietary alternatives and advise on food


10

consistency to reduce the risks of ill health (such as an increased chance of pneumonia) and promote safety and comfort in swallowing (Deane, 2001b).

� Occupational Therapy – Occupational therapists can help maintain self-care, work and leisure activity for as long as possible, thus maximising independence, and ensure that the home and workplace are safe environments, thus minimising the likelihood of injuries. Interventions may include support in organising the daily routine, learning new skills for alternative or adaptive ways to carry out activities, or providing and advising on specialist equipment or resources, for example, mobility aids, home or car modifications (Deane, 2001c).

� Education, Counselling and Social Support – These programs are very important for chronic disease management and can have significant impacts on quality of life through: increasing the understanding of PD; improving coping skills; developing problem-solving strategies; improving health confidence; encouraging the PWP to remain physically and socially active; and optimising medical treatment and compliance rates (Montgomery, 1994). In addition to helping PWP, some of these programs focus on assisting carers learn how to take care of PWP directly or take on new roles within the family unit, such as learning to perform household chores or home/vehicle maintenance.

Improving access to non-drug therapies and education, counselling and social support programs may reduce the burden of disease faced by PWP and help them remain in employment, maintain their independence and reduce the use of other health or aged care services.

Nursing Home Placement

As PD progresses, activities of daily living (ADL) slowly become hindered and PWP may lose their ability to live independently. In particular, by Stage V PWP are restricted to bed or a wheelchair unless aided. However this does not mean that by Stage V all PWP are admitted into a nursing home – often if they have a carer (often a healthy spouse or child) who lives with them and have access to additional formal home care, they are able to remain at home.

However due to functional impairment, drug complications (such as hallucinations) and comorbidities associated with PD (such as dementia and incontinence), PWP have a higher probability of nursing home placement than the general population.

Recently two studies have examined the main determinants of nursing home placement and found that the most significant risk factors influencing nursing home admission (other than age) are dementia, confusion and hallucinations, falls/imbalance, restricted ADL, and disease stage (see Table 2-3). However the importance of these factors was highly dependent on whether the person lived alone or not.

� For those who lived alone, functional impairment had a strong impact on nursing home admission, whereas

� For those who lived with a carer, neuropsychiatric symptoms (such as dementia, confusion and hallucinations) had a strong impact. Aarsland (2000) hypothesised this was because these symptoms place considerable stress on the carer.


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TABLE 2-3 DETERMINANTS OF ADMISSION TO NURSING HOMES (ODDS RATIOS)

Risk Factor Aarsland (2000) – Norway Hely (1999) – Australia Married 1.4*

Dementia 2.4** 4.01*

Hallucinations 2.5** 3.62*

Confusion 5.47**

Falls/Imbalance 1.8* 4.23*

Incontinence 1.8*

UPDRS ADL scale > 11 2.7**

UPDRS MOTOR scale > 22 1.9*

Columbia score/5 points 1.46*

Bradykinesia/5 points 2.10*

Disease Stage 2.3* 2.69*

*Univariate analysis: P<0.05

** Multivariate analysis P<0.05

As most of the factors identified are significantly related to increased disease stage, it is not surprising that in the multivariate analysis that disease stage is no longer significant – especially when age is included as a variable.

Pooling across all follow-ups, nursing home admission of PWP in Stages I to III is not statistically different from the general population, but is higher for PWP in Stages IV and V, and decreases by age group.

TABLE 2-4 NURSING HOME ADMISSION (% OF PWP), BY AGE AND DISEASE STAGE

Disease Stage Aged 30-69 Aged 70-79 Aged 80-89 Aged 90+ All Ages I 0.0% 0.0% 0.0% 0.0% II 0.0% 1.1% 0.0% 0.2% III 0.7% 0.9% 0.0% 0.7% IV 4.3% 25.3% 26.1% 17.3% V 42.9% 88.0% 80.0% 70.5% All Stages 2.1% 13.6% 32.1% 7.6% General Population 0.04% 0.97% 5.12% 25.37% 0.7%

TABLE 2-5 NURSING HOME ADMISSION (RELATIVE RISK COMPARED TO GENERAL POPULATION)

Disease Stage Aged 30-69 Aged 70-79 Aged 80-89 Aged 90+†

All Ages

I 0.0 0.0 0.0 0.0 0.0 II 0.0 1.1 0.0 0.0 0.3 III 7.1 0.9 0.0 0.0 1.1 IV 43.3 26.0* 5.1* 1.0 25.3* V 427.0* 90.4* 15.6* 3.2 103.2* All Stages 21.0* 14.0* 6.3* 1.3 11.2*

* Statistically significant (P<0.05)

† Assuming PWP aged 90+ experiences at least the same amount of nursing home admission as 80-89 year olds.


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Palliative Care

As PD is a chronic and progressive disease, eventually many PWP require palliative care. Palliative care is:

"a concept of care which provides coordinated medical, nursing and allied services for people who are terminally ill, delivered where possible in the environment of the person's choice, and which provides physical, psychological, emotional and spiritual support for patients, and support for patients' families and friends. The provision of hospice and palliative care services includes grief and bereavement support for the family and other carers during the life of the patient and continuing after death."13

Thus palliative care requires a combination of medical, nursing, social work, occupational therapy and physiotherapy, and aims to ease symptoms, help the individual deal with daily living and prepare for the likelihood of death.

2.6 RECENT MEDICAL ADVANCES

2.6.1 DEEP BRAIN STIMULATION (DBS)

Rather than surgically destroy areas of the brain, an electrode is implanted to provide high frequency stimulation and block electrical signals in targeted areas of the brain that control movement blocking the abnormal nerve signals that cause tremor and PD symptoms. Generally, these targets are the ventrointermedialis nucleus of the thalamus (VIM), subthalamic nucleus (STN), and globus pallidus pars interna (GPi).

Before the procedure, a neurosurgeon uses an MRI, CAT scanning or microelectrode recording to identify and locate the exact target in the brain generating the PD symptoms.

The DBS system consists of three components:

� The lead (also called an electrode)—a thin, insulated wire—is inserted through a small opening in the skull and implanted in the brain. The tip of the electrode is positioned within the targeted brain area.

� The extension is an insulated wire that is passed under the skin of the head, neck, and shoulder, connecting the lead to the neurostimulator.

� The neurostimulator (the "battery pack") is usually implanted under the skin near the collarbone, chest or abdomen.

Once the system is in place, electrical impulses are sent from the neurostimulator up along the extension wire and the lead and into the brain. These impulses interfere with and block the electrical signals that cause PD symptoms (NINDS, April 2005c).

DBS mimics the effects of surgical destruction but has:

� a markedly reduced risk of permanent side effects,

� the ability to reverse the procedure if a better treatment is developed in the future, and

13 http://www.pallcare.org.au/Default.aspx?tabid=301


13

� the amount of stimulation is easily adjustable—without further surgery—if the condition changes.

At present, this procedure is only available for PWP whose symptoms can no longer be managed medically. While most PWP still need to take medication after undergoing DBS, many PWP are able to greatly reduce the amount of medication taken.

2.6.2 IMPROVED DIAGNOSIS TESTS

Recently researchers from the Prince of Wales Medical Research Institute, the Royal North Shore Hospital, and the University of Würzburg, Germany, developed a new blood test with improved diagnostic accuracy for the early diagnosis of PD. The test focuses on the death of neuromelanin-containing pigmented brain cells, which may be identified through a blood test for a new protein created by the body’s immune response. The test is currently being refined and a multicentre, international study is being conducted to determine the usefulness of the test to objectively and sensitively diagnose PD in clinical practice. Researchers from the Prince of Wales Medical Research Institute and the University of Saarland, Germany, are also examining the use of ultrasound imaging to improve the diagnostic accuracy of PD. (POWMRI 2007).

Similar research is also being conducted by researchers from the Howard Florey Institute, The University of Melbourne and The Mental Health Research Institute of Victoria.

2.6.3 IMPROVED DRUG DELIVERY SYSTEMS

Clinical trials of transdermal patches for the delivery of PD drugs (namely the dopamine agonist rotigotine) are currently underway. The continuous delivery may prove to be superior to oral delivery due to a reduced occurrence of the “on-off” effect (Moyer 2004).

2.6.4 STEM CELL TRANSPLANTATIONS

Stem cells are unspecialized cells that consistently have the ability to produce an identical copy of themselves when they divide and can be induced to become cells with special functions, such as dopamine producing cells.

Currently, stem cell transplantations is largely an experimental treatment as it is not very cost-effective, there remains some technical problems (such as controlling differentiation and creating an adequate supply of cells) and (in some cases) serious side-effects (such as tumours and dyskinesias).

Adult Stem Cells

Adult stem cells are derived from numerous sources, including the umbilical cord, placenta, bone marrow, nose, blood and other places in the human body. Most adult stem cells are multipotent and thus can develop only into closely related cells – for example, red and white blood cells). The main advantage of using adult stem cells from the same patient is that they do not carry the same risk of immune rejection and hence there is no need to use anti-rejection drugs.

Several studies have been successful in using adult stem cells to treat PD (Australian Government, 2005):


14

� Pre-Clinical Trials: differentiation of various adult stem cells to dopaminergic neurones and transplantation in mice/rats led to increased dopamine production.

� Clinical Trials: A phase 2 trial is in progress in the US with cultured retinal pigment epithelial cells (68 patients).

Embryonic Stem Cells

Embryonic are stem cells derived from the inner cell mass of a blastocyst (an early stage embryo approximately 4 to 5 days old). Embryonic stem cells are pluripotent and thus can develop into all or many of the different cells contained in the body (but not the whole organism).

“To date, advocates of cell transplantation therapy have focused on transplantation of dopaminergic neurons into the striatum as a potential treatment. This is in the hope that the transplanted cells will provide dopamine replacement in a more physiological manner, reversing a fundamental neurotransmitter deficiency that arises from degeneration of neurons in the midbrain of patients with PD.

Current evidence for the effectiveness of this approach comes predominantly from the results of two double blind, placebo controlled studies of transplantation of fetal donor mesencephalic cell grafts into the striatum of patients with Parkinson’s disease. Both studies failed to show benefit and some patients developed the side effect of additional and disabling involuntary movements in the unmedicated state, a problem directly attributable to the treatment rather than the disease. However, both studies also demonstrated evidence of neuronal survival and at least some restoration of dopamine function as evidenced by the results of functional imaging studies in their patients. These studies do not eliminate the possibility of this strategy becoming an effective treatment in the future, but do highlight the potential dangers and unanswered methodological questions” Fung (2005)


15

3. PREVALENCE AND MORTALITY OF PD

The best method of measuring community prevalence is through well-designed epidemiological studies of populations, preferably Australian, longitudinal and prospective . In particular for PD, a two-phase investigation method (screening followed by detailed medical examination to confirm the diagnosis) is the best possible method available (Benito-Leon et al 2004) as it ensures that under-diagnosis and misdiagnosis is kept to a minimum. The “gold standard” for confirmation of diagnosis remains histological confirmation on post-mortem material. Obviously, this is unavailable when attempting to estimate current prevalence.

For this study a broad definition of PD is used that incorporates both primary and secondary PD as all these people experience similar symptoms and treatments. This definition helps identify the issues at a clinical, care, social, and economic level and supports better public policy decisions.

Under-diagnosis and misdiagnosis are significant problems faced when measuring the prevalence of PD, and consequently in the effective treatment of PD. Currently there is no definitive test for PD. Long lead times between the onset of PD, the appearance of symptoms and diagnosis significantly decreases the window of opportunity for preventive or protective treatments and means that PWP incur unnecessarily high levels of indirect costs and burden of disease that could be reduced t hrough earlier treatment 14. Furthermore early diagnosis enables the person and the family to adjust better to the diagnosis, understand the illness, learn how to cope better through adequate counselling and education and better plan for the future financially and legally.

The prime methodology used to estimate the prevalen ce, and subsequently economic cost, of PD is based on the utilisation of PD medic ations.

� The lower bound estimate of the prevalence of PD, which is subsequently used to estimate the lower bound economic cost, is based on Begg et al (2007), adjusted to include secondary PD (see Section 12.1).

� The upper bound estimate of the prevalence of PD is, which is subsequently used to estimate the upper bound economic cost, is based on the utilisation of PD medications adjusted to include under-diagnosed cases (see Section 12.2).

3.1 PREVALENCE OF PD

It is possible to estimate the prevalence of PD based on the use of the prescriptions commonly involved in the treatment of PD. As most of these drugs are available through the PBS and RPBS, this methodology is close to a ‘census’ approach15:

� Overestimation of prevalence may occur due to some non-PD conditions may be misdiagnosed as PD and that medications used to treat PD can also be used for the

14 The burden of disease would probably still be lower in the early stages compared to a diagnosed person, due to experiencing milder symptoms at that disease stage. 15 Other minor issues that may result in underestimation of prevalence include: Ineligibility for PBS or RPBS; use of private patients, doctor’s bag, hospital issue drugs; and use of non-PBS or RPBS listed drugs (such as orphenadrine hydrochloride, procyclidine hydrochloride, ropinirole hydrochloride and tolcapone).


16

treatment of other diseases (especially Restless Legs Syndrome, schizophrenia, some types of dystonia in adults and children, pituitary tumours and bladder problems); and

� Underestimation of prevalence may occur due to under-diagnosis of PD or the misdiagnosis of PD as non-PD as this may result in non-medicated cases or the use of other drugs to treat misdiagnosed PD. Furthermore some cases may be deliberately un-medicated due to:

�� having low levels of disability and the wish to temporarily delay the use of medication (which falls in effectiveness over time);

�� suffering significant side effects; or

�� no longer responding to the available medications.

Dr J. F. Slattery from the Central West Parkinson’s Disease Research Project analysed individual’s records from the PBS Item and Patient data and cross-matched with Medicare data. This type of analysis, which focuses on unique individuals, removes the problem of double counting PWP. Based on the use of anticholinergics and/or dopaminergics16 it was estimated that there were some 110,000 people prescribed PD medications in 2005 . This analysis is based on a short run of data (1½ years17).

Data from the General Practice Research Network (GPRN) indicate how often PD-associated medications are prescribed by doctors for non-PD problems and can act like an “audit of prescribers” to be applied to the PBS/RPBS data to remove those individuals who are prescribed PD medications for other diseases.

What is GPRN?

GPRN is based on a survey run by the Health Communication Network (HCN). Each week a panel of 330 participating GPs supply anonymous patient data through Medical Director (patient management software developed by HCN). The data is then compiled by HCN to create a longitudinal, patient-based dataset. The full dataset currently covers 12 million encounters over 5 years. While only 330 GPs participate in the survey, all encounters are recorded (about 5,000 per year) which means that the survey captures 1.8% of all GP encounters (see Appendix 1 for more information about GPRN).

Of the 1850 prescriptions of PD-associated medications in the GPRN database in 2004, only 60% were prescribed explicitly for Parkinsonism. Many of the non-PD reasons for prescription were for diseases that often affect younger people, such as Restless Legs Syndrome (7.5%) and Schizophrenia or Psychosis (see Table 3-1). Some GPs may also be

16 Amantadine Hydrochloride, Apomorphine Hydrochloride, Benzhexol Hydrochloride, Benztropine Mesylate, Biperiden Hydrochloride, Bromocriptine (As Mesylate), Cabergoline, Entacapone, Levodopa/Benserazide, Levodopa/Carbidopa, Levodopa/Carbidopa/Entacapone, Pergolide Mesylate, Selegiline Hydrochloride 17 Many of the issues described above would disappear in a study that estimates annual prevalence based on patterns in the person’s use of drugs in the future – including only those that fit a certain pattern in the use of drugs. For example, under-diagnosed PWP would eventually be diagnosed and would be prescribed the drugs; misdiagnosed PWP (as PD or as non-PD) would not respond to the drugs and many would eventually be prescribed the correct drug; people who use the drugs for short periods could be assumed to have been treated for other diseases (as the use of PD drugs for PD tends to be long term). Furthermore, the use of doctor’s bag and hospital issue drugs are not long term options. However as the linking of Medicare numbers to the PBS only occurred in 2002, there is no rich demographic history of usage. Several more years of data would enhance the usefulness of this data.


17

prescribing PD-medications experimentally to see whether the patient reacts positively (for example, in abnormal involuntary movements) and some GPs listed reasons that are not necessarily consistent with the literature and may be coding errors18.

TABLE 3-1 REASONS FOR PD-DRUG PRESCRIPTIONS

Reason for PD-Drug Prescriptions % of Prescriptions Parkinsonism 59.5% Musculoskeletal Conditions

Restless Legs Syndrome 7.5% Abnormal Involuntary Movements* 1.3% Other Muscle Symptom 1.7% Back symptom/musculoskeletal 0.3%

Neurological Disorders Dementia 0.9% Other Neurological Disorders* 2.9%

Mental Disorders Schizophrenia or psychosis 9.1% Other Mental Disorders 1.4%

Vascular Disorders 1.7% Script renewal* 7.8% Investigation* 0.4% Adverse Reaction to Drug* 2.6% Other 3.0%

* Highly likely to include patients treated for parkinsonism.

Source: GPRN special request

Correspondingly, for 55% of patients who were prescribed PD-associated medications the reason for prescription was explicitly for PD. By adjusting Dr Slattery’s PBS/RPBS estimates19 by the proportion of PD-drugs prescribed explicitly for PD reasons (based on age-sex specific rates), it is estimated that at least 54,700 people had dia gnosed PD in 2005. This methodology takes a conservative approach and removes many of the younger people receiving PD-medications (and thus may underestimate the number of young people with PD and overestimate the average age of onset) but still 14% of cases occur between 55 and 64 years (as a proportion of 65+) and 9% of cases occur before 55 years (as a proportion of 65+).

18 In the final analysis the person’s medical history was examined so to better allocate “script renewals” to a particular disease. 19 A new methodology has been developed by the Central West Parkinson’s Disease Research Group, which may help estimate prevalence, incidence, mortality and co-morbidity to a more accurate degree.


18

FIGURE 3-1 PATIENTS BY REASONS FOR PRESCRIBING PD-DRUGS, MALES , 2005

0

1000

2000

3000

4000

5000

6000

7000

8000

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+

Age Group

Pat

ient

s

Other Reasons

Parkinsonism

FIGURE 3-2 PATIENTS BY REASONS FOR PRESCRIBING PD-DRUGS, FEMALES , 2005

0

1000

2000

3000

4000

5000

6000

7000

8000

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+

Age Group

Pat

ient

s

Other Reasons

Parkinsonism

Under-Diagnosis and Misdiagnosis

The use of the terms under-diagnosis and misdiagnosis are not to be construed as criticism of the medical profession. Medical science is ever evolving and future discoveries will advance the science and are likely to make diagnoses more accurate. It should be noted also that misdiagnosis does not necessarily mean inappropriate medication and treatment. Diseases with similar symptoms may have quite similar impacts on the health and wellbeing of the individual and require similar medications, treatment, care and support.

Nevertheless, under-diagnosis and misdiagnosis result in governments, private sector, health insurers and individuals incurring higher levels of health system costs through ineffectual treatments aimed at the wrong disease (for example, drug treatments) and unnecessary diagnostic testing. Furthermore, typical health system costs due to PD would be consistently higher and increase faster over time due to the missed opportunities to use preventative or


19

protective treatments (for example, pharmacotherapies for PD are generally much less expensive than institutionalised care). Moreover, due to the faster progression of PD the individual would leave the workforce sooner than otherwise and thus governments would lose tax revenue and spend more on welfare payments (these are in the nature of transfer payments which do not add to the total cost per se but they do affect the distribution of that cost between various payers).

Misdiagnosis

Hughes (1992) found a diagnosis rate of up to 25% false positives of PD among non-movement disorder specialists using post-mortem examinations20. Especially in the early stages of the disease, most misdiagnoses occur when trying to differentiate idiopathic PD (Poewe and Wenning, 2002) from:

� Secondary PD (due to other causes) – drug induced (MPTP exposure), cerebrovascular disease, or viral infection (encephalitis, AIDS, Creutzfeld-Jacob disease); and

� Other diseases with similar symptoms – multiple system atrophy, progressive supranuclear palsy, dementia, cortico-basal degeneration, or amyotrophic lateral sclerosis.

TABLE 3-2 DIAGNOSES & FALSE POSITIVES (%)

Actual Disease Hughes (1992)* Meara (1999) De Rijk (1995) Essential Tremor 4.3 48 Vascular pseudo-parkinsonism 13.0 36 Dementia 26.1 16 Multiple system atrophy 21.7 - Progressive supranuclear palsy 26.1 - Other 8.7 -

PD Diagnoses False Positives 25 26 16 * Based on 23 misdiagnosed cases: dropped postencephalatic parkinsonism as ‘diseases with similar symptoms’.

Misdiagnosis is an important issue. Generally speaking, the higher the rate of misdiagnosis the less effective the drugs that are prescribed to reduce symptoms or slow the progression of the disease.

Under-Diagnosis

Studies have shown that the reduction of dopamine is already well advanced in the brains of PWP with only mild symptoms – thus the underlying disease process has been progressing over a number of years (at least four) before clinical deficits present. Even when symptoms become noticeable, it is sometimes up to two years before a definite diagnosis is made (Hely, 2005, and expert opinion). The presence of other diseases, such as dementia and general ageing can obscure PD symptoms and reduce the chance of an accurate diagnosis. Differences in referral habits and accessibility of medical services across countries can also impact the chance of being diagnosed (de Rijk, 1995).

A number of European studies have found that there are around 3.2 undiagnosed cases for every ten diagnosed cases (see Table 3-3).

20 This rate of false diagnosis among neurologists may have improved since this study was conducted.


20

TABLE 3-3 PREVIOUSLY UNDIAGNOSED CASES IN POPULATION BASED PREVALENCE STUDIES

Study Newly Diagnosed

(% of All Cases)

Undiagnosed Cases per Ten Diagnosed Cases

France 11% 1.2 Netherlands 13% 1.5 Girona, Spain 26% 3.5 Pamplona, Spain 52% 10.8 Italy 31% 4.5

Total 24% 3.2 Source: De Rijk (1997)

Summary of PD Medications Analysis Estimates

Table 12-1 outlines the final estimates of prevalence of PD in Australia in 2005 using the PD medications prevalence methodology. Given the likely error margins around the rates of under-diagnosis and misdiagnosis, we assume that the number of misdiagnosed cases (approximately 25% of currently diagnosed PWP) is directly offset by the number of undiagnosed cases (approximately 32% of currently diagnosed PWP) and thus the total estimate of PWP is broadly unchanged21.

Using this methodology it is estimated that there w ere 54,700 PWP in 2005, of which 28,100 were male and 26,600 were female.

The prevalence of PD increases substantially with age, from 290 per 100,000 for people aged 55 to 64 years to 2,940 per 100,000 for people aged over 85 years. Males are more likely to have PD than females. People of working age (15-64 years) comprise 18% of PWP.

TABLE 3-4 ESTIMATED PREVALENCE OF PD, 2005

Prevalence Rates (%) Cases

Age Males Females Total Males Females Total 0-4 0.00 0.00 0.00 0 0 0 5–14 0.00 0.00 0.00 0 0 0 15–24 0.00 0.00 0.00 0 0 0 25–34 0.02 0.00 0.01 200 0 200 35–44 0.03 0.01 0.02 500 200 700 45–54 0.14 0.06 0.10 2,000 800 2,800 55–64 0.34 0.25 0.29 3,700 2,700 6,400 65–74 1.22 0.99 1.10 8,300 7,100 15,400 75-84 2.33 1.92 2.10 9,600 10,400 20,000 85+ 3.69 2.59 2.94 3,700 5,500 9,200

Total 28,100 26,600 54,700 Rows and columns may not sum due to rounding.

21 In Section 12 we conduct sensitivity analysis around this assumption by increasing the prevalence of PWP by 32% to take into account undiagnosed cases.


21

3.2 INCIDENCE OF PD

Begg et al (2007) used a software program called DISMOD II to model incidence and duration of PD from estimates of prevalence, remission (assumed to be zero), and the relative risk of mortality. A similar methodology (using the same remission rate and relative risk of mortality data) is used to model incidence from the PD medications estimates.

It is estimated that there were around 8,900 new ca ses of PD in 2005.

� The average age of onset was 76 years for males and 79 years for females22.

� For at least 16% of PWP, the age of onset occurs during working ages (younger than 65 years).

TABLE 3-5 INCIDENCE OF PD, 2005

Incidence Rates (%) New Cases

Age Males Females Total Males Females Total 0-4 0.00 0.00 0.00 0 0 0 5–14 0.00 0.00 0.00 0 0 0 15–24 0.00 0.00 0.00 0 0 0 25–34 0.00 0.00 0.00 0 0 0 35–44 0.01 0.00 0.00 100 0 100 45–54 0.01 0.01 0.01 200 100 300 55–64 0.05 0.04 0.05 600 400 1,000 65–74 0.16 0.12 0.14 1,100 800 1,900 75-84 0.42 0.25 0.32 1,700 1,300 3,100 85+ 1.10 0.65 0.79 1,100 1,400 2,500


3.3 PREVALENCE BY DISEASE STAGE

Many of the costs associated with PD increase with disease stage. For example, as the disease progresses the individual increasingly loses the ability to move freely (or the predictability of being able to move freely) thus inhibiting the ability to perform everyday tasks. PD also has an increasing impact on mental health, cognitive and social functioning and the ability to communicate to others. Consequently productivity, carer, aids and modification costs are likely to increase with disease stage.

This report uses the Hoehn and Yahr staging system to estimate the costs of PD.

The number of people in each disease stage is estimated by applying the proportion of time spent in each disease stage as reported in Section 2.4, to the incidence rates estimated in Section 0, and assuming that the median time from onset to death is 12.2 years (see Section 2.4).

It is estimated that in 2005 there were:

� 44,300 PWP in the initial stages of PD (Stages I to III),

22 The conservative methodology used may result in an underestimation of the number of young people with PD and consequently overestimate the average age of onset.


22

� 7,100 PWP in the intermediate stage of PD (Stage IV), and

� 3,300 PWP in the end stage of PD (Stage V).

FIGURE 3-3 PREVALENCE OF PD, BY DISEASE STAGE

17,400

14,600

12,400

7,100

3,300

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

16,000

18,000

20,000

I II III IV V

Disease Stage

Peo

ple

FIGURE 3-4 AGE DISTRIBUTION OF PWP, BY DISEASE STAGE, MALES

40-4445-49

50-5455-59

60-6465-69

70-7475-79

80-8485-89

90+

I

II

III

IV

V

0%5%

10%15%20%25%30%35%40%45%

50%

Proportion of People in Disease Stage

Age

Disease Stage

I II III IV V


23

FIGURE 3-5 AGE DISTRIBUTION OF PWP, BY DISEASE STAGE, FEMALES

40-4445-49

50-5455-59

60-6465-69

70-7475-79

80-8485-89

90+

I

II

III

IV

V

0%5%

10%15%20%25%30%35%40%45%

50%

Proportion of People in Disease Stage

Age

Disease Stage

I II III IV V

3.4 PWP RESIDING IN AGED CARE FACILITIES

The population of PWP residing in aged care facilities is estimated by applying the relative risk ratios of nursing home admission for Stages IV to V by age group contained in Table 2-5 to the rate of admission in the general population (see Figure 3-6).

It is estimated that in 2005 there were 5,500 PWP r esiding in aged care facilities, of which 146 are aged younger than 65 years (equal to 1.4% of all PWP aged younger than 65 years and 12.0% of PWP aged younger than 65 years in Stages IV or V).

FIGURE 3-6 PWP IN AGED CARE FACILITIES , BY DISEASE STAGE

400500 500

1,600

2,500

0

500

1,000

1,500

2,000

2,500

3,000

I II III IV V

Disease Stage

Peo

ple


24

3.5 DEATHS DUE TO PD

In 2004 there were 918 people who died whose underlying cause of death was idiopathic PD, and three people who died whose underlying cause of death was secondary PD (see Table 3-6). Of these deaths, 56% also had a disease of the respiratory system as an associated cause of death (namely pneumonia), 30% also had a mental and behavioural disorder as an associated cause of death (namely dementia), and 23% had a symptom/sign not elsewhere classified (including fatigue, dysphagia, cachexia and asphyxia).

An Australian study that followed 149 PWP over 15 years found that pneumonia is the most common cause of excess deaths of PWP due to dysphagia and disordered respiratory mechanisms (27% of deaths), and 48% of the survivors had evidence of dementia (Hely et al 2005).

TABLE 3-6 PD DEATHS & OTHER ASSOCIATED CAUSES OF DEATH, 2004

Other Associated Causes of Death Deaths % I Infectious and parasitic diseases 25 3% II Neoplasms 33 4% III Diseases of the blood and blood-forming organs 3 0% IV Endocrine, nutritional and metabolic diseases 76 8% V Mental and behavioural disorders 273 30% VI Diseases of the nervous system 49 5% VII Diseases of the eye and adnexa 0 0% VIII Diseases of the ear and mastoid process 0 0% IX Diseases of the circulatory system 374 41% X Diseases of the respiratory system 518 56% XI Diseases of the digestive system 19 2% XII Diseases of the skin and subcutaneous tissue 8 1% XIII Diseases of the musculoskeletal system and connective tissue 43 5% XIV Diseases of the genitourinary system 64 7% XV Pregnancy, childbirth and the puerperium 0 0% XVI Certain conditions originating in the perinatal period 0 0% XVII Congenital malformations, deformations and chromosomal abnormalities 0 0% XVIII Not elsewhere classified 209 23% XIX Injury, poisoning and certain other consequences of external causes 28 3% XX Other External Causes 41 4%

All Deaths with idiopathic PD as the Underlying Ca use 918 100% Source: ABS 3303.0, special request

There were a further 1,634 people who died who had idiopathic or secondary PD listed as an associated cause of death (see Table 3-7). Of people whose death certificate had idiopathic PD listed as an associated cause of death (1,621):

� 195 died due to cancer (around half as likely than the general population),

� 304 died due to stroke (around twice as likely than the general population),

� 474 died due to cardiovascular and other diseases of the circulatory system (excluding stroke) (just as likely as the general population),

� 218 died due to diseases of the respiratory system (around 50% more likely than the general population), of whom 94 died due to influenza or pneumonia (over twice as likely than the general population), and

� 19 died due to an accidental fall (over 78% more likely than the general population).


25

TABLE 3-7 UNDERLYING CAUSES OF DEATH, 2004

Underlying Causes of Death PD* as an Associated

Cause

All Underlying Causes

Deaths % Deaths % Diff. I Infectious and parasitic diseases 31 2% 1,807 1% 40% II Neoplasms (cancer) 195 12% 38,853 29% -59% III Diseases of the blood and blood-forming organs 4 0% 485 0% -33% IV Endocrine, nutritional and metabolic diseases 71 4% 5,068 4% 15% V Mental and behavioural disorders 63 4% 3,414 3% 51% VI Diseases of the nervous system 77 5% 4,561 3% 43% VII Diseases of the eye and adnexa - - 9 0% - VIII Diseases of the ear and mastoid process - - 10 0% - IX Diseases of the circulatory system 778 48% 47,637 36% 34% Cerebrovascular (stroke) 304 19% 12,041 9% 107% Cardiovascular & other diseases of the circulatory

system 474 29% 35,596 27% 9%

X Diseases of the respiratory system 218 13% 11,640 9% 53% Influenza and pneumonia 94 6% 3,381 3% 128% XI Diseases of the digestive system 56 3% 4,553 3% 1% XII Diseases of the skin and subcutaneous tissue 10 1% 337 0% 143% XIII Diseases of the musculoskeletal system and

connective tissue 20 1% 1,039 1% 57%

XIV Diseases of the genitourinary system 52 3% 2,976 2% 43% XV Pregnancy, childbirth and the puerperium - - 11 0% - XVI Certain conditions originating in the perinatal period - - 560 0% - XVII Congenital malformations, deformations and

chromosomal abnormalities - - 581 0% -

XVIII Not elsewhere classified - - 1,001 1% - XIX Injury, poisoning and certain other consequences of

external causes - - - - -

XX Other External Causes 42 3% 7,966 6% -57%

All Underlying Causes 1,621 132,508 *Idiopathic PD

Source: ABS 3303.0, special request

Similarly, Hely (2005) found that PWP were more likely to die from stroke (SMR23 2.28) and less likely to die from cancer (SMR 0.5), but were equally likely to die from cardiovascular disease (compared to people of a similar age). Furthermore of the survivors, 81% had fallen due to PD, and 23% had sustained fractures.

“Parkinson’s disease was considered to have contributed to the deaths of 43 patients (52%) because of pneumonia, inanition, pulmonary embolism, suicide, and patients who were Stage 5 who had cardiovascular or cerebrovascular events but were considered unsuitable for rehabilitation.” (Hely, 2005: 192)

The above estimates of deaths due to PD utilises underlying cause of death on death certificates to estimate the number of deaths due to each disease.

In some cases a person with PD may die from an entirely different disease, such as colorectal cancer. Whereas in other cases both PD and another disease (such as pneumonia) may both contribute towards the death. Consequently doctors filling out the death certificate may under-recognise the presence of other contributing causes of death, particularly in the case of chronic diseases. Beyer et al (2001) found that only 56% of death certificates of PWP had PD registered as either an underlying or contributing cause of death.

23 Standardised mortality ratio


26

Consequently estimating the number of deaths in 2004 due to PD on the basis of underlying cause (921) is likely to be an underestimate, a more accurate estimate may be in the range of 1,329 (52% of 2,55524). However as both these estimates are based on PD being recorded as an associated or contributing cause of death, it is likely that both these estimates are conservative. Nevertheless, these estimates are used as a lower and upper range of deaths due to PD to estimate the associated costs, namely the disease burden and funeral costs.

It is estimated that in 2005 there were between 954 and 1,376 deaths due to PD in 2005 (inflated based on age-sex specific mortality rates).

FIGURE 3-7 PD DEATHS, MALES , 2005

0

50

100

150

200

250

300

350

400

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

Age Group

Dea

ths

Half of PD Associated Cause (Total = 842)PD Underlying Cause (Total = 584)

24 Underlying cause of death is PD (921) plus people who died of other causes who also had PD (1,634).


27

FIGURE 3-8 PD DEATHS, FEMALES , 2005

0

50

100

150

200

250

300

350

400

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

Age Group

Dea

ths

Half of PD Associated Cause (Total = 535)PD Underlying Cause (Total = 371)

3.6 PROJECTIONS

Estimates of PD prevalence and deaths in 2005, and projected prevalence and deaths in 2025, are made on the basis of the imputed age-specific prevalence rates set out in Appendix 2. This means that the impacts of future demographic ageing will be incorporated in the future prevalence and deaths estimates. However it does not take into account changes in risk factors or future treatments that may affect prevalence and death rates.

There are estimated to be 54,700 PWP in 2005, incre asing to 62,800 people (up 15%) by 2010 and to 98,500 people (up 80% from today) by 20 25.

� Equivalent to an annual growth rate of 4% per annum between 2005 and 2025.

� Females comprise 49% of PWP.

� People of working age (15-64 years) comprise 18% of PWP, which is projected to decline a little to 14% by 2025.


28

FIGURE 3-9 PROJECTIONS OF PD PREVALENCE

0

20,000

40,000

60,000

80,000

100,000

120,000

2005 2010 2015 2020 2025

Peo

ple

Prevalence in 2005 =54,700

Prevalence in 2025 = 98,500

There are estimated to be between 954 and 1,376 dea ths from PD in 2005, doubling to between 1,949 and 2,811 deaths by 2025.

� Females comprise 39% of deaths. This proportion is projected to decline a little to 34% by 2025.

� People of working age (15-64 years) comprise 2.5% of deaths, which is projected to decline a little to 1.9% by 2025.

FIGURE 3-10 PROJECTIONS OF DEATHS DUE TO PD

0

500

1,000

1,500

2,000

2,500

3,000

3,500

4,000

4,500

5,000

2005 2010 2015 2020 2025

Half of PD Associated CausePD Underlying Cause

Deaths in 2005 = 1376

Deaths in 2005 = 954

Deaths in 2025 = 2811

Deaths in 2025 = 1949


29

4. ESTIMATING THE ECONOMIC COSTS OF PD

This report intends to quantify the health system costs, productivity losses, and other costs of PD. In a fundamental sense, such quantification is a historical accounting exercise, although properly complying with best practice health economics methods is not a straightforward task. A full economic analysis of the effects of a disease on the economy would also examine the long-run situation where costs are passed onto society through adjustments in wages and prices. For example, a reduction in the supply of labour would increase wages, which would be passed on to consumers through price increases. At the same time a decrease in the demand for goods and services would decrease prices, which would push down wages. The overall impact on the economy depends on a complex array of elasticities. The implicit and probable economic assumption in this report, therefore, is that the numbers of such people would not be of sufficient magnitude to substantially influence the overall clearing of these markets.

Thus, no ‘what-if’, or counterfactual inferences, such as ‘what would happen if more people used a particular service’ should be drawn from the costing analysis alone.

4.1 INCIDENCE AND PREVALENCE APPROACHES

This report utilises the prevalence (annual costs) approach to estimating the costs of PD. The alternative approach is the incidence (lifetime costs) approach. The difference between incidence and prevalence approaches is illustrated in the following diagram.

Consider three different cases of people with PD:

� a, who was diagnosed with PD in the past and has incurred the associated costs up to the year in question, with associated lifetime costs of A + A*, shaded in green ;

� b, who was diagnosed with PD in the past and has incurred the associated costs in 2005 as well as in the past and future, with associated lifetime costs of B + B* + B**, shaded in blue ; and

� c, who was diagnosed with PD in 2005, with lifetime costs of C + C*, shaded in red .

All costs should be expressed as present values relative to 2005.

Using an incidence approach, only cases like ‘c’ would be included, with the total cost estimate equivalent to the sum of all the costs in the base year (ΣC) plus the present value of all the future costs (ΣC*). Costs associated with PWP diagnosed in an earlier year would be excluded.

Using a prevalence approach, costs in 2005 relating to a, b and c would all be included, with total costs equal to Σ(A + B + C). Costs in all other years are excluded.


30

FIGURE 4-1 INCIDENCE AND PREVALENCE APPROACHES TO MEASUREMENT OF ANNUAL COSTS Past Base

year Future

Annual prevalence costs in the base year = Σ(A + B + C); Annual incidence costs in the base year = Σ(C + present value of C*)

Note that Figure 4-1 also defines the lifetime costs of PD for each person, as follows:

Lifetime cost for person c (= Incidence cost) = C + present value of C*

Lifetime cost for person b = B + present values of B* and B** Lifetime cost for person a = A + present value of A*

4.2 CLASSIFICATION OF COSTS

Conceptual issues relating to the classification of costs include the following.

� Direct and indirect costs : Although literature often distinguishes between direct and indirect costs, the usefulness of this distinction is dubious, as the specific costs included in each category vary between different studies, making comparisons of results somewhat difficult.

� Real and transfer costs : ‘Real costs use up real resources, such as capital or labour, or reduce the economy’s overall capacity to produce (or consume) goods and services. Transfer payments involve payments from one economic agent to another that do not use up real resources. For example, if a person loses their job, as well as the real production lost there is also less income taxation, where the latter is a transfer from an individual to the government. This important economic distinction is crucial in avoiding double-counting. It has attracted some attention in the literature.’ (Laing and Bobic, 2002: 16, Laurence and Spalter-Roth, 1996: 14)

� Economic and non economic costs : Economic costs encompass loss of goods and services that have a price in the market or that could be assigned an approximate price by an informed observer. ‘Non-economic’ costs include the loss of wellbeing of the individual as well as of their family members and carers. This classification is ill-defined, since ‘non-economic’ costs are often ascribed values and the available methodologies are becoming more sophisticated and widely accepted. We acknowledge that controversy still surrounds the valuation of ‘non-economic’ costs and that the results should be presented and interpreted cautiously.

� Prevention and case costs : We distinguish between: the costs following from, and associated with a disease; and costs directed towards preventing the disease. Prevention activities include public awareness and education about PD. In similar vein,

A* A

B* B B**

C C*


31

costs of insuring against impacts of the disease are excluded, but the study includes the gross costs of the impacts themselves.

There are six types of costs associated with PD (see Table 4-1).

� Direct financial costs to the Australian health sys tem (Section 5) include the costs of running hospitals and nursing homes (buildings, care, consumables), GP and specialist services reimbursed through Medicare and private funds, the cost of pharmaceuticals (PBS and private) and of over-the-counter medications, allied health services, research and “other” direct costs (such as health administration).

� Productivity costs (Sections 6 and 7) include productivity losses of the PWP (long-term employment impacts), premature mortality and the value of informal care (including lost income of carer).

� Administrative costs and other financial costs (Section 8) include government and non-government programs such as respite, community palliative care, out-of-pocket expenses (such as formal care, aids, equipment and modifications that are required to help cope with illness, and transport and accommodation costs associated with receiving treatment), and funeral costs.

� Transfer costs (Section 9) comprise the deadweight losses associated with government transfers such as taxation revenue foregone, welfare and disability payments.

� Non-financial costs (Section 10) are also very important—the pain, suffering and premature death that result from PD. Although more difficult to measure, these can be analysed in terms of the years of healthy life lost, both quantitatively and qualitatively, known as the “burden of disease”.

Different costs of diseases are borne by different individuals or sectors of society. Clearly the PWP bears costs, but so do employers, government, friends and family, co-workers, charities, community groups and other members of society.

It is important to understand how the costs are shared in order to make informed decisions regarding interventions. While the PWP will usually be the most severely affected party, other family members and society (more broadly) also face costs as a result of PD. From the employer’s perspective, depending on the impact of PD, work loss or absenteeism will lead to costs such as higher wages (i.e. accessing skilled replacement short-term labour) or alternatively lost production, idle assets and other non-wage costs. Employers might also face costs such as rehiring, retraining and workers’ compensation.

While it may be convenient to think of these costs as being purely borne by the employer, in reality they may eventually be passed on to end consumers in the form of higher prices for goods and services. Similarly, for the costs associated with the health system and community services, although the Government meets this cost, taxpayers (society) are the ultimate source of funds. However, for the purpose of this analysis, a ‘who writes the cheque’ approach is adopted, falling short of delving into second round or longer term dynamic impacts.

Society bears both the resource cost of providing services to PWP, and also the ‘deadweight’ losses (or reduced economic efficiency) associated with the need to raise additional taxation to fund the provision of services and income support.


32

Typically six groups who bear costs and pay or receive transfer payments are identified, namely the:

� PWP;

� friends and family (including informal carers);

� employers;

� Federal government;

� State and local government; and

� the rest of society (non-government, i.e. not-for-profit organisations, workers’ compensation groups etc).

Classifying costs by six cost categories and allocating them to six groups enables a framework for analysis of these data to isolate the impacts on the various groups affected by PD. This includes different levels of government, the business sector and community groups.

TABLE 4-1 SCHEMA FOR COST CLASSIFICATION

Conceptual group

Subgroups Bearers of Cost Comments

Pain/Suffering and Premature Mortality

Burden of Disease (YLLs, YLDs, DALYs) – incidence approach.

PWP* The VSL implicitly includes costs borne by the individual. Thus the net value of BoD should exclude these costs to avoid double counting.

Health System Costs

Costs by type of service (and prevalence in 2001)

PWP*, governments and society (private health insurers, workers’ compensation)

Productivity Costs

Lost productivity from temporary absenteeism

PWP, employer and government#

Lost management productivity Employer and government#

Long-term lower employment rates

PWP and government# Includes premature retirement

Premature death PWP and government# Loss of productive capacity

Additional search and hiring replacement

Employer Incurred when prematurely leave job

Lost informal carer productivity Friends and family, and employer#

Includes both paid and unpaid work

Other Financial

Respite/Palliative Care Services

Governments, PWP, and society

Out-of-pocket expenses PWP Formal care, aids, equipment, modifications, travel, accommodation.

Funeral costs brought forward Friends and family

Transfer costs Deadweight Loss Society Relate to transfers from taxation, welfare etc

* Friends/family may also bear loss of wellbeing, health costs and lower living standards as a result of PD; however, care is needed to assess the extent to which these are measurable, additional (to avoid double counting) and not follow-on impacts. For example, a spouse may pay a medical bill and children may share in lower household income when the PWP’s work hours are reduced – but as this is simply redistribution within

The Household


33

family income it is not measured here. Moreover, if a family carer develops depression or a musculoskeletal disorder, it would be necessary to estimate the aetiological fraction attributable PD, allowing for other possible contributing factors.

# Where earnings are lost, so is taxation revenue and frequently also there are other transfers, such as welfare payments for disability/sickness/caring etc, so Governments share the burden.

4.3 CALCULATING PARAMETERS

There are essentially two ways of estimating each element of cost for each group:

� Top-down : These data may provide the total costs of a program element (eg, health system); or

� Bottom-up : These data may provide estimates of the number of cases in the category (‘n’) and the average cost for that category. The product is the total cost (eg, the wage rate for lost earnings multiplied by the average number of days off, and the number of PWP to whom this applies).

The top-down approach is applicable to community programs, and is also part of the approach to health system costs. The bottom-up approach applies in other cases.

It is generally more desirable to use top-down national datasets in order to derive national cost estimates. However this is often only possible for large and well-studied diseases; not necessarily for PD.

On the other hand, using top-down estimates can be problematic in some areas (eg, productivity).

Whenever obtaining parameters required for implementing the bottom-up approach, statistical analysis of datasets and a literature review (focussing on Australian literature but sometimes supplemented by international material) has been used.

� Data on direct health costs and the burden of disease from the AIHW – these are in turn based on other data sources, such as the Australian Hospital Statistics and BEACH data for GP costs.

� Data on other financial costs are drawn from a variety of sources – for example, the productivity costing combines international literature on lower employment for people with PD with ABS data on average employment rates and earnings.

The main limitations of these data are in relation to timeliness, comparability and objectivity.

� Direct cost of disease data has been calculated by the AIHW for 1993-94 and 2000-01 (the latter released in May 2004), again with limited comparability – the latter series for example only includes 86% of the recurrent costs included in the former series.

� The NHS and SDAC use self-reported data. The latter two studies do not use medical verification of whether the person has been diagnosed with PD.

Unfortunately, available data on PD and its associated costs are subject to considerable uncertainties, with a number of these detailed below.

� Surveys :

�� Lack of consensus about definition: Whether people with secondary PD are included? How are cost components valued?

�� Variations in survey methodology.

�� Gaps in data collections and consistency.


34

�� Different time frames: For example, use of annual versus lifetime.

�� Reluctance to report disease.

�� Limited populations: Representativeness, clinic or population focused, small sample sizes.

�� Survey limitations: The wording of questions may affect the answers given.

� Short-Run Costs :

�� Patchy administrative information on what proportion of costs are attributable to PD.

�� Limited relevant data from many non-government administrative sources, about non-government costs relating to PD.

�� Often surveys focus on other aspects of PD (such as treatment outcomes) rather than the costs of PD (such as productivity costs). Consequently the questions asked may be less than ideally constructed, if they ask the relevant questions at all.

� Long-Run Costs : In particular, correlation not causation.

�� Socioeconomic issues: Sometimes it is difficult to separate out the before and after impact of PD on employment, income and education without a longitudinal study.

�� Comorbidities: There may be another disease that is responsible for part (or all) of the costs (such as the presence of another chronic disease having a large impact on productivity costs).

�� Factor X: There may be another underlying cause of both PD and the resulting cost, which makes them look like one is caused by the other (for example, head trauma resulting in both PD and reduced employment rates).

These issues are addressed by controlling for other factors where possible, and conducting sensitivity analysis.

4.4 DISCOUNT RATES

A discount rate is used to convert future income or a cost stream into the total value in today’s dollars.

Choosing an appropriate discount rate for present valuations in cost analysis is a subject of some debate, and can vary depending on what type of future income or cost stream is being considered. There is a substantial body of literature, which often provides conflicting advice, on the appropriate mechanism by which costs should be discounted over time, properly taking into account risks, inflation, positive time preference and expected productivity gains.

The absolute minimum option that one can adopt in discounting future income and costs is to set future values in current day dollar terms on the basis of a risk free assessment about the future (that is, assume the future flows are similar to the certain flows attaching to a long-term Government bond).

Wages should be assumed to grow in dollar terms according to best estimates for inflation and productivity growth. In selecting discount rates for this project, we have thus settled upon the following as the preferred approach.

� Positive time preference : We use the long-term nominal bond rate of 5.8% pa (from recent history) as the parameter for this aspect of the discount rate. (If there were no


35

positive time preference, people would be indifferent between having something now or a long way off in the future, so this applies to all flows of goods and services.)

� Inflation : The Reserve Bank has a clear mandate to pursue a monetary policy that delivers 2% to 3% inflation over the course of the economic cycle. This is a realistic longer run goal and we therefore endorse the assumption of 2.5% pa for this variable. (It is important to allow for inflation in order to derive a real (rather than nominal) rate.)

� Productivity growth : The Commonwealth Government's Intergenerational report assumed productivity growth of 1.7% in the decade to 2010 and 1.75% thereafter. We suggest 1.75% for the purposes of this analysis as many of the productivity costs extend past 2010.

There are then three different real discount rates that should be applied:

� To discount income streams of future earnings, the discount rate is:

5.8 - 2.5 - 1.75 = 1.55%.

� To discount health costs, the discount rate is:

5.8 - (3.2 - 1.75) - 1.75 = 2.6%.

� To discount other future streams (healthy life) the discount rate is:

5.8 – 2.5 = 3.3%

While there may be sensible debate about whether health services (or other costs with a high labour component in their costs) should also deduct productivity growth from their discount rate, we argue that these costs grow in real terms over time significantly as a result of other factors such as new technologies and improved quality, and we could reasonably expect this to continue in the future.


36

5. HEALTH SYSTEM COSTS

Health system costs due to PD are substantial compared to other diseases because PD is a chronic and progressive disease and treatment is varied and complex.

5.1 TOTAL HEALTH SYSTEM COSTS

AIHW regularly conducts surveys into health system expenditure associated with various diseases. The most recent analysis estimated that in 2001 $192.7 million was spent treating PD.

The AIHW include only 86% of total recurrent health expenditure in their estimates of expenditure by disease and injury, referred to as ‘allocated’ health expenditure. The ‘unallocated’ remainder includes capital expenditures, expenditure on community health (excluding mental health), public health programs (except cancer screening), health administration and health aids and appliances. Allowance is made for the unallocated component after presentation of the allocated components. However the health system cost estimates do not include the additional funding for health research announced in the 2006-07 Federal budget.

Since 2000-01 only one drug (Stalevo) has been listed on the PBS for PD. This listing would not result in a significant increase in expenditure on pharmaceuticals as Stalevo is a combination of active ingredients already available in other listed drugs (levodopa with carbidopa and entacapone), however some switching between drugs may occur.

The AIHW 2000-01 data were used as the base for Access Economics’ estimates for spending on PD in 2005. Two factors contributed to the extrapolation.

� Health cost inflation (AIHW 2005a: 10) measured 3.5% in 2000/01-01/02, 4.1% in 2001/02-02/03, 3.8% in 2002/03-03/04, and is assumed to measure 3.2% (the average rate between 1997/98-02/03) till the end of 2005 – 17.5% overall for the whole period; and

� estimated growth in the population from 2001 to 2005, derived from ABS demographic data for each age-gender group.

TABLE 5-1 HEALTH SYSTEM COSTS ($M IN $2000-01)

Age Males Females Total 0-4 0.027 0.068 0.095 5–14 0.013 0.003 0.015 15–24 0.031 0.196 0.227 25–34 0.214 0.044 0.258 35–44 0.667 0.663 1.330 45–54 1.587 3.350 4.938 55–64 12.724 5.916 18.640 65–74 34.853 18.312 53.165 75-84 46.294 34.870 81.164 85+ 12.231 20.666 32.897

Total 108.641 84.088 192.730 Source: AIHW special request


37

TABLE 5-2 HEALTH SYSTEM COSTS ($M IN $2005)

Age Males Females Total 0-4 0.0 0.0 0.0 5–14 0.0 0.0 0.0 15–24 0.0 0.0 0.0 25–34 0.3 0.0 0.3 35–44 0.9 0.9 1.8 45–54 2.2 4.7 7.0 55–64 20.0 9.5 29.4 65–74 48.9 25.3 74.2 75-84 72.1 51.5 123.6 85+ 20.3 32.2 52.5

Total 164.7 124.1 288.8

TABLE 5-3 HEALTH SYSTEM COSTS PER PWP ($ IN $2005)

Age Males Females Total 0-4 0 0 0 5–14 0 0 0 15–24 0 0 0 25–34 1,200 0 1,200 35–44 1,900 5,300 2,800 45–54 1,100 5,900 2,500 55–64 5,400 3,500 4,600 65–74 5,900 3,600 4,800 75-84 7,500 5,000 6,200 85+ 5,400 5,800 5,700

Total 5,900 4,700 5,300

5.2 HEALTH SYSTEM COSTS BY TYPE OF COST

The main health system cost components for PD in 200525 were26:

� Aged care ($168.6 million, $3,100 per PWP or $30,80 0 per PWP in an aged care facility) : nursing home placement is often required, particularly in the later stages of PD due to functional impairment, drug complications (such as hallucinations) and comorbidities associated with PD (such as dementia and incontinence).

� Pharmaceuticals ($44.0 million or $800 per PWP) : drug treatments for PD – includes drugs listed on the PBS and RPBS (such as levodopa), non-subsidised prescription drugs (such as ropinirole) and over-the-counter drugs (such as paracetamol and vitamins).

� Inpatient & outpatient hospital services ($44.2 mil lion or $800 per PWP) : usually for the purpose of confirming diagnosis and levodopa responsiveness, or for the management of motor fluctuations and dyskinesias (Temlett, 2006). Hospital admission may also be required for treatment for falls and other accidents, depression, some invasive surgery (such as lesioning or neuro-stimulator placement), aspiration pneumonia, and autonomic nervous system disorders, such as severe constipation, urinary disorders, arising from PD or PD medication.

25 All costs are for 2005 only (i.e. per year). 26 These costs exclude the additional health system costs discussed in later sections.


38

Other health system costs include:

� GP services ($4.4 million or $80 per PWP) 27: on-going consultations with GPs are required to manage symptoms, prescribe drugs, and treat complications.

� Out-of-hospital specialists ($2.8 million or $50 pe r PWP)28: neurologists are often consulted to diagnose PD and to advise on appropriate treatment pathways.

� Other health practitioners ($8.5 million or $150 pe r PWP): PWP may also be referred to physiotherapists, speech therapists, occupational therapists, clinical psychologists and specialist PD nurses.

� Imaging and pathology ($2.1 million or $40 per PWP) : some services may be used during the diagnosis stage to rule out other possible causes of symptoms, but some of these costs may be avoidable. Additional services may also be required to investigate PD complications – such as the extent of fractures due to accidental falls.

� Research ($14.2 million or $260 per PWP) : ongoing epidemiological research into the causes of idiopathic PD, basic research (e.g. brain functions), applied research (e.g. synthesising large molecule interactions) and developmental research for new treatments (e.g. drug therapies).

FIGURE 5-1 HEALTH SYSTEM COSTS BY COST COMPONENT, 2005

Pharmaceuticals15.2%

Aged Care58.4%

Hospital (in and outpatient)15.3%

Imaging and Pathology0.7%

Other Medical Services1.0%

Other Health Professionals

2.9%

GP Services1.5%

Research4.9%

Source: AIHW Special Request

27 The underlying source used by AIHW to measure the cost of GP services is the BEACH database 1999–00 to 2001–02. The proportion of problems by disease was used to split top-down total expenditure (based on Medicare). Consequently this may be an underestimate of the total GP costs associated with PD because: individuals may consult the GP for more than just PD-related issues (even though PD may be the primary reason), and issues regarding identifying encounters for rarer diseases using BEACH (see Appendix 1). 28 The underlying source used by AIHW to measure the cost of GP services is the BEACH database 1999–00 to 2001–02. GP referral patterns were used to allocate total specialist expenditure (from AIHW). This may be an underestimate of total specialist costs associated with PD depending on the rates of GP referral to specialists for PD, compared to other diseases, and issues regarding identifying encounters for rarer diseases using BEACH (see Appendix 1).


39

FIGURE 5-2 HEALTH SYSTEM COSTS PER PERSON BY COST COMPONENT, 2005

$-

$1,000

$2,000

$3,000

$4,000

$5,000

$6,000

$7,000

25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

ResearchOther Health ProfessionalsOther Medical ServicesImaging and PathologyGP ServicesHospital (in and outpatient)Aged CarePharmaceuticals

These health costs vary considerably by age – with pharmaceuticals declining in share of health system costs over time, and aged care costs increasing in share over time (see Figure 5-3).

FIGURE 5-3 HEALTH SYSTEM COSTS BY COST COMPONENT, BY AGE, 2005

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

ResearchOther Health ProfessionalsOther Medical ServicesImaging and PathologyGP ServicesHospital (in and outpatient)Aged CarePharmaceuticals

5.3 HEALTH SYSTEM COSTS BY DISEASE STAGE

Two studies were identified that estimated health system costs by disease stage.

� Findley (2003) surveyed 428 PWP in the UK in 1998 and estimated health system costs, social services, and private expenditure by disease stage (see Table 5-4). Health system costs included: pharmaceutical; GP; other health professionals; and hospital inpatient and outpatient costs. Unfortunately the study included nursing home


40

costs in private expenditure. The study found that average health system costs were ₤2,298 per PWP (A$5,954 in 200529) and were three times higher for PWP in Stage V compared to PWP in Stages I and II.

� Spottke et al (2006) surveyed 145 PWP in Germany between 2000 and 2002 and estimated drug, medical and non-medical direct costs by disease stage (see Table 5-5). Unfortunately the article only reported direct costs from the Gesetzliche Krankenversicherung (the statutory health insurance authority) perspective (i.e. the total direct costs largely excludes the cost of nursing care and patient co-payments, for which there is no data by disease stage). The study found that average health costs (drug and direct medical) were €3,37830 (A$5,014 in 200531) and were three times higher for PWP in Stage V compared to PWP in Stages I and II.

TABLE 5-4 HEALTH SYSTEM COSTS PER PWP, BY DISEASE STAGE (₤)

Disease Stage Health Costs

(₤)

% of Survey Respondents in Each Disease Stage

Stage I 1,402 26% Stage II 1,442 21% Stage III 2,601 28% Stage IV 3,615 20% Stage V 4,076 4% Unknown 992 1%

Total 2,298 100% Source: Findley (2003)

TABLE 5-5 HEALTH SYSTEM COSTS PER PWP, BY DISEASE STAGE (€)

Disease Stage Drug Costs (€)

Other Direct Costs*

(€)

% of Survey Respondents in Each Disease Stage

Stage I 1,290 570 13% Stage II 1,310 360 30% Stage III 1,700 1,680 30% Stage IV 1,860 4,070 17% Stage V 1,290 4,820 10%

Total 1,520 1,858 100% Source: Spottke et al (2006)

These studies are used to estimate the distribution of health costs by stage in Australia. For each study the average health system costs are estimated using the estimated distribution of PWP by disease stage in Australia (see Section 0). Then the ratio of health system costs compared to this average is estimated for each disease stage. The final results are adjusted so the total health expenditure by disease stage equals that in Section 5.1.

29 Converted using PPP. 30 Euros 31 Converted using PPP.


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TABLE 5-6 HEALTH SYSTEM COSTS PER PWP (RATIO TO AVERAGE), BY DISEASE STAGE

Disease Stage

% of PWP in Each Stage

Findley (2003) Spottke (2006) Weighted Average

Stage I 32% 0.66 0.63 0.65 Stage II 27% 0.68 0.57 0.65 Stage III 23% 1.22 1.15 1.20 Stage IV 13% 1.70 2.02 1.78 Stage V 6% 1.91 2.08 1.96

Total 1.08 1.15 1.10

Health system costs in Australia by disease stage is estimated by applying the weighted average of these ratios to the average health system costs as estimated in Table 5-3.

TABLE 5-7 HEALTH SYSTEM COSTS PER PWP, BY DISEASE STAGE ($ IN $2005)

Disease Stage Costs per PWP Stage I 3,400 Stage II 3,400 Stage III 6,400 Stage IV 9,400 Stage V 10,400

Total 5,300

5.4 ADDITIONAL HEALTH SYSTEM COSTS

The extent to which these data are accurate is largely dependent on the underlying estimates of the use of the health system by PWP. For example, GP visits, hospital separations and deaths due to PD may underestimate health system costs through the incorrect attribution of the use of these services to other diseases or injuries (for example, costs associated with accidental falls or pneumonia due to the symptoms of PD would be attributed to accidental falls or pneumonia separately, respectively).

The methodology used to attribute various pharmaceutical costs to PD would also impact on estimates: use of PD drugs for non-PD reasons would overestimate pharmaceutical costs, whereas use of non-PD drugs to treat PD symptoms would underestimate costs.

Furthermore health system costs would be strongly affected (either over or underestimated) by the level of undiagnosed and misdiagnosed cases of PD: for example PWP who also have dementia in aged care facilities, if their admission was counted as “due to dementia” rather than “due to PD”.

Temlett and Thompson (2006) analysed admissions of PWP into the Royal Adelaide Hospital between 1999 and 2004. In the hospital each admission is coded according to the primary diagnosis (the reason for admission based on the acute problem treated), although additional information on secondary diagnoses is also recorded (other existing diseases which also require management during the hospital stay). The study found that where PD was a secondary diagnosis, the associated primary diagnosis was often directly attributable to the effects of PD or the complications of treatment: namely, accidental falls and fractures (due to problems with gait and balance), pneumonia (due to dysphagia), dementia (commonly associated with PD), syncope and encephalopathy (through adverse drug reactions). Gastrointestinal and genitourinary infections may also be a complication of PD in some cases.


42

Overall it was found that for every hospital admission directly due to PD, there were at least two additional admissions due to complications that were coded to a different disease or injury. However note that this does not take into account other comorbidities that may increase the likelihood (i.e. visual impairment) or severity (i.e. osteoporosis) of the hospital admission.

TABLE 5-8 HOSPITAL ADMISSIONS OF PWP

Diagnosis Hospital Admissions Ratio of Admissions: Primary to Secondary

PD primary diagnosis 116 PD secondary diagnosis 645 5.56 Related to PD

Accidental falls/fractures 81 0.70 Pneumonia 78 0.67 Dementia 22 0.19 Encephalopathy 45 0.39 Syncope32 26 0.22 Sub-total 251 2.16

Unrelated to PD Genitourinary infections 71 0.61 Gastrointestinal 70 0.60 Cardiovascular 75 0.65 Stroke 23 0.20 Haematological 19 0.16 Neoplasms 46 0.40 Other 117 1.01 Sub-total 394 3.40

Total 761 Sub-totals do not add to total due to comorbidity in some cases.

Source: Temlett and Thompson (2006)

In 2003-04 there were 2,976 hospital admissions due to idiopathic PD and 209 due to secondary PD – thus there were around 2,224 hospital admissions for accidental falls that were a complication of PD, and 2,142 hospital admissions for pneumonia that were a complication of PD. Assuming that the costs of treating accidental falls and pneumonia per PWP are the same regardless of underlying cause, there was at least $55.4 in additional health system costs to treat the complications of PD (an additional 19% of the total health cost of PD).

32 Temporary loss of consciousness or “fainting” due to postural hypotension (a fall in blood pressure when moving from lying to sitting, or from sitting to standing).


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TABLE 5-9 ADDITIONAL HEALTH SYSTEM COSTS ($2005)

PD Hospital Admissions

Additional Hospital Admissions

Total Health System Cost per Hospital

Admission ($)

Additional Health System

Cost ($m) Accidental Falls

Pneumonia Accidental Falls

Pneumonia

Males 0-4 0 0 0 8,636 20,168 0.0

5–14 1 1 1 7,550 21,622 0.0 15–24 9 6 6 8,126 44,649 0.3 25–34 17 12 11 7,164 34,323 0.4 35–44 37 26 25 7,357 31,118 0.8 45–54 78 54 52 8,668 21,335 1.3 55–64 216 151 145 11,044 21,901 4.0 65–74 504 352 339 13,362 16,689 8.9 75-84 834 582 560 14,338 12,896 13.7

85+ 239 167 161 14,913 11,683 3.9 Females

0-4 1 1 1 7,894 19,427 0.0 5–14 0 0 0 11,900 21,709 0.0

15–24 1 1 1 7,793 53,175 0.0 25–34 1 1 1 8,211 30,940 0.0 35–44 17 12 11 9,688 32,167 0.4 45–54 63 44 42 12,337 30,445 1.5 55–64 131 91 88 10,771 23,693 2.5 65–74 307 214 206 13,913 22,193 6.4 75-84 552 385 371 11,213 15,540 8.6

85+ 177 124 119 12,110 13,206 2.7 Total 3,185 2,224 2,142 55.4

Sources: AIHW special data request, AIHW National Hospital Morbidity DataCube


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TABLE 5-10 ADDITIONAL HEALTH SYSTEM COSTS PER PWP ($2005)

Age Males Females Total 0-4 0 0 0 5–14 0 0 0 15–24 0 0 0 25–34 1,500 0 1,500 35–44 1,600 2,200 1,800 45–54 700 1,900 1,000 55–64 1,100 900 1,000 65–74 1,100 900 1,000 75-84 1,400 800 1,100 85+ 1,000 500 700

Total 1,200 800 1,000

TABLE 5-11 ADDITIONAL HEALTH SYSTEM COSTS PER PWP, BY DISEASE STAGE ($2005)

Disease Stage PD Medications Analysis Stage I 700 Stage II 700 Stage III 1,200 Stage IV 1,700 Stage V 1,800

Total 1,000

FIGURE 5-4 PNEUMONIA HEALTH SYSTEM COSTS BY COST COMPONENT, 2005


Aged Care2.4%

Out-of-hospital medical22.5%


2.3%

Research0.9%


Based on respiratory illnesses

Source: AIHW (2005a)


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FIGURE 5-5 ACCIDENTAL FALLS HEALTH SYSTEM COSTS BY COST COMPONENT, 2005


Aged Care2.6%



6.6%

Research0.1%

Pharmaceuticals4.6%

Based on injuries

Source: AIHW (2005a)

5.5 SUMMARY OF HEALTH COSTS

It is estimated that the health costs of PD was $34 3.9 million in 2005.

� Of this expenditure, 43% was spent treating women with PD and 57% is spent treating men with PD.

� Of this expenditure, 14% was spent treating people aged less than 65 years (see Figure 5-6).

FIGURE 5-6 TOTAL HEALTH SYSTEM COSTS ($M), BY AGE

0

20

40

60

80

100

120

140

160

0-4 5–14 15–24 25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

Hea

lth S

yste

m C

osts


46

The average total health system cost per person wit h PD was $6,300 per annum.

� Cost per PWP was lowest in the younger than 55 age-group, and highest in the 75 and over group, where residential care becomes the dominant cost element (see Figure 5-7).

� Cost per PWP increases with disease stage, where complications are more likely to occur and residential care becomes the dominant cost element (see Figure 5-8).

FIGURE 5-7 TOTAL HEALTH SYSTEM COSTS PER PWP ($), BY AGE

0

1,000

2,000

3,000

4,000

5,000

6,000

7,000

8,000

0-4 5–14 15–24 25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

Hea

lth S

yste

m C

osts

FIGURE 5-8 TOTAL HEALTH SYSTEM COSTS PER PWP ($), BY DISEASE STAGE

4,100 4,100

7,500

11,100

12,200

-

2,000

4,000

6,000

8,000

10,000

12,000

14,000

I II III IV V

Disease Stage

Hea

lth S

yste

m C

osts


47

The health cost profile for PD was dominated by hig h care residential accommodation or ‘aged care’ – $170.0 million (49.4%).

� The second largest cost component for PD was hospital costs (21.6% of total costs in 2005 or $74.4 million) while the third largest cost component for PD was pharmaceuticals (15.8% of total costs in 2005 or $54.3 million).

� Unreferred attendances (GPs), imaging and pathology costs and other out-of-hospital medical (specialists) were $19.9 million (5.8%); and other (allied) health practitioners $10.9 million (3.2%).

� Research into PD is estimated as $14.5 million in 2005 (4.2% of total health expenditure on PD). The average research share for all health conditions, of total allocated health expenditure, is lower at 2.4% (AIHWa, 2005).

FIGURE 5-9 HEALTH SYSTEM COSTS BY COST COMPONENT, 2005


Aged Care49.4%



3.2%

Research4.2%


Note: includes the additional health system costs due to accidental falls and pneumonia.

Costs by who bears the cost

� Governments bore around two thirds of the health system costs (67%), while individuals bore another 20%, and other parties (private health insurance, charities) bore the remaining 13% (see Figure 5-10).


48

FIGURE 5-10 HEALTH SYSTEM COSTS, BY WHO BEARS THE COST

State/Territory Government

22%

Individuals20%

Other13%

Federal Government

45%


49

6. PRODUCTIVITY COSTS

Productivity costs due to PD can have a significant and sometimes ‘hidden’ impact on people with PD and their family.

The impact of PD on the ability to move freely (or the predictability of being able to move freely) can inhibit the ability to perform everyday tasks, especially labour-intensive ones. PD can also impact on mental health (such as lack of sleep, stress, anxiety, and depression), cognitive and social functioning and the ability to communicate with others. Consequently PD can reduce the productivity of an individual in terms of paid employment, unpaid work (i.e. housework or yardwork) and voluntary work.

The productivity losses depends on whether they are a short run disruption until production is restored to former levels (due to temporary absences from work to attend medical appointments), or a long run loss of the labour resource (through premature workforce separation or premature mortality) which reduces the capacity of the economy to produce at any given level of employment.

Carers may also take time off work to accompany PWP to medical appointments, care for them at home, and undertake much of the unpaid work the PWP used to do – such as provide childcare, do the housework, yard work, shopping and so on.

With production losses occurring in paid employment there are associated taxation losses. However, given that taxation is a transfer payment from one economic entity to another, it is only the deadweight costs of raising taxation revenue through alternative sources that are included as real economic costs.

While the impact of PD on both PWP and carers may result in production losses, only the impact on PWP will be considered in this section (see Section 7 for the impact on carers).

6.1 LITERATURE REVIEW

Ultimately it would be best to use large Australian studies of the general community to identify the impact of PD on productivity. The application of the results of international studies to the Australian context is often limited due to differences in the social security system and access to health care, which impact on the ability for PWP to continue working.

Unfortunately the literature review identified no Australian studies and many of the available datasets (NHS, BEACH and GPRN) either suffered from small sample sizes or did not collect the relevant data. The SDAC was also unusable since many of the survey respondents suffering PD were in the older age groups and so most would not normally work regardless of their diagnosis with PD (and thus the standard errors were too large to draw any conclusions with statistical significance).

Furthermore, many of the international studies are clinic-based rather than population-based, and so respondents are more likely to be in the more advanced stages of PD than the PD population as a whole and thus the estimated impacts on productivity are likely to be higher than those experienced by the PD population as a whole. However, it is better to make a conservative estimate of productivity impacts based on the available international literature than none at all.


50

Initially PD may result in lower productivity while at work , including:

� reduced hours,

� lower capacity while at work,

� restricted activities or changed responsibilities, or

� a change in occupation/industry.

Furthermore, PWP whose employment relies on ‘personal presentation’, such as salespeople or public-interface staff, may be strongly affected by PD symptoms such as dysphagia, PD faces (mask-like appearance), and dysarthria (impaired articulation).

Rubenstein (1997) found that 76.2% of PWP reported that their health limited the kind of work that they could perform, compared with 44.5% of the control group. However translating this finding into a measurable impact on productivity is not possible without additional information – such as wage rates.

During this time, workers may also be temporarily absent from paid employment due to being unwell more often than the average worker (for example, more bed days). Le Pen (1999) found that of the 7% of PWP still working (average age 68 years), on average they incurred 4.8 sick days per six months – mainly from fatigue and recurrent falls.

Whetten-Goldstein (1997) also reported that PWP (average age 71.7) spent 326 hours on housework per year and 23 hours on yard work per year, compared with an average of 739 hours on housework per year and 210 hours on yard work per year for older individuals in general. This equates with a loss of 51.6 days of housework and 23.4 days of yardwork (assuming an 8 hour day).

However the amount of temporary absenteeism would differ according to the individuals’ disease stage. For example, Chrischilles (1998) found that Mean Bed or Restricted Days increased with the disease stage (see Table 6-1).

TABLE 6-1 NUMBER OF BED OR RESTRICTED DAYS, BY DISEASE STAGE

Disease Stage: 1 or 1.5 2 2.5 3 4 Average

Mean Bed or Restricted Days 0.8

(1.6) 4.6

(1.0) 3.6

(1.2) 6.4

(1.6) 7.0

(2.6) 4.2

Number of respondents 28 76 50 28 11

Standard errors in brackets.

Source: Chrischilles (1998)

While not necessarily directly related to employment, this pattern is assumed to be similar to the likely pattern of the effects of PD on temporary absenteeism by disease stage and is applied to Le Pen (1999) by multiplying them by the ratio of mean bed or restricted days to the average.


51

TABLE 6-2 LOST PAID AND UNPAID DAYS, PER SIX MONTHS

Disease Stage: 0.5 to 2.5 3 4 5 Average Mean Bed or Restricted Days 3.6 6.4 7.0 7.0 4.2 Ratio to Average 0.9 1.5 1.7 1.7 1.0 Temporary Absenteeism from Paid Work (Days)

4.1 7.3 8.0 8.0 4.8

Note that the impacts of PD on temporary absenteeism from paid employment will only be applied to PWP who are still working, which is highly dependent on both age and disease stage (see Section 2.4). As there are insufficient data to control for comorbidities, it is not known whether the PWP would have experienced temporary absenteeism due to another chronic disease, regardless of the presence of PD. Consequently the estimated costs of temporary absenteeism should be interpreted as costs associated with PD rather than costs due to PD.

In the long run, PD may result in premature workforce separation . Factors that may influence when a PWP chooses to retire include (Main et al, 2005, Spelton et al, 2002).

� Economic needs: such as the need for income or to pay off debt, pay for bills and medical insurance, and the need to provide for others.

� Workplace environment: such as the employer’s willingness to accommodate the worker’s needs, how co-workers respond, and whether social support is provided.

� Motivation: such as finding work that is meaningful to the individual in terms of enjoyment, using the individual’s talents, and the perceived contribution to society.

� Balance: such as the number of hours spent at work compared to hours spent with family/friends.

� Personal growth: such as the role of work as a distraction from the disease (or just something to do), providing a sense of self-worth and control over their life.

The employment impact of PD is often reported either by the age of the PWP or by the severity of symptoms. Unfortunately, the impact of each factor is more complex – older individuals are more likely to have severe PD, but concurrently older individuals are less likely to be employed (and thus the production impacts tend to be lower). Whether the decrease in workforce participation is due to PD or due to age is not straightforward and none of the studies identified uses multivariate analysis to separate out the effects. The studies identified do ask the question whether the individual experienced premature workforce separation or early retirement due to PD:

� Spate (1999) found that after five years of illness 25% of PWP are no longer able to work, after 5-9 years of illness 80% of PWP are no longer able to work33.

� Le Pen (1999) found that 20% of PWP not working stopped due to PD.

� Clarke (1995) found that 29% of PWP experienced premature retirement.

Many of these findings are consistent with four studies finding that on average between 20% and 29% of PWP retired or were unemployed due to PD. Chrischilles (1998) also found that

33 Quoted in Dodel (1998): Harris, A. (1971) Handicapped and impaired in Great Britain London: Her Majesty’s Stationery Office.


52

26.9% of PWP were retired or unemployed due to PD and that the rate of retirement or unemployment increased with the disease stage (see Table 6-3)34.

TABLE 6-3 RETIRED OR UNEMPLOYED DUE TO PD (% OF PWP), BY DISEASE STAGE

Disease Stage: 1 or 1.5 2 2.5 3 4 Overall Retired or unemployed due to PD 3.7% 29.7% 23.9% 50% 36.4%* 26.9%

* Decrease in retirement or unemployment due to PD may be due to proportionally more PWP in Stage IV are older than 65 years than those in earlier disease stages, and thus would have retired by that stage anyway.


Unfortunately the self-reported methodology used by these studies often overestimates the impact of diseases due to the respondents not being able to foresee whether they were going to retire early soon afterwards anyway due to other health reasons (thus they would not have continued working for the whole remaining average time in the workforce for their age group). For example, Schrag (2003) found that of young-onset PWP (average age 53.7 years) were significantly more likely to be unemployed for more than 6 months due to the disability than old-onset PWP (average age 66.5 years) (56% vs 7%) and of those retired young-onset PWP were significantly more likely to retire early due to PD than old onset PWP (97% versus 73%). As the average disease stage was not significantly different between the two groups, it indicates that the main reason for the difference in the impact of PD on employment is because many of the old-onset PWP would have retired by that age anyway.

Consequently the pattern in early retirement found by Chrischilles (1998) suggests that PWP retire early if they reach Stages II to III before the age that the same proportion of the population (26.9%) would have retired at – 54 years for women and 60 years for men. If they did retire early, then the number of years lost will be assumed to be the same as the average number of years left for the general population who are working and similarly aged as the PWP when they reached Stage II to III. For example, if a male PWP was 57 when they reached Stage III, they would retire early and would lose 4.6 years of employment.

34 This finding is also supported by Hagell (2002) who found that initially 37.5% of PWP aged younger than 65 years were working and then five years later only 25% of the same people still aged younger than 65 (but now with a higher level of disability) were working.


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FIGURE 6-1 RATES OF RETIREMENT OF PWP

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

47 52 57 62 67 72

Age

% R

etire

d

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

Yea

rs L

eft i

n La

bour

For

ce

Average retired early due to Pd % Retired, Males % Retired, Females

Years Left in Labour Force, Males Years Left in Labour Force, Females

Sources: Chrischilles (1998) and ABS 6202.0.

As there are insufficient data to control for comorbidities, it is not known whether the PWP would have experienced premature retirement due to another chronic disease, regardless of the presence of PD. Consequently the estimated costs of premature retirement should be interpreted as costs associated with PD rather than costs due to PD.

Finally, if an individual prematurely dies due to PD at an age where many of their counterparts are still working, then society loses the remaining value of their expected lifetime earnings.

6.2 ESTIMATING PRODUCTIVITY COSTS

6.2.1 SHORT RUN PRODUCTIVITY LOSSES

The economic cost of short run productivity losses (temporary absenteeism) are estimated using the friction method.

The friction method was developed by Koopmanschap et al (1995). This approach estimates production losses35 for the time period required to restore production to its pre-incident state.

The time period persists until the PWP returns to work, or is replaced, if they become unable to work. This method generally assumes that there is unemployment, and that a person who was previously not earning an income replaces the person not working due to PD.

35 Based on neoclassical theory, wages and other marginal costs are assumed to be equal to the value of the marginal revenue generated by an additional worker under conditions of full employment (Berger and Murray, 2001). Lost production is thus the value of the wages (measured as average earnings) plus other inputs to production (capital, plant and equipment, land, enterprise etc) multiplied by the number of workdays missed.


54

In the meantime, employers often choose to make up lost production through overtime or employment of another employee that attracts a premium on the ordinary wage. The overtime premium represents lost employer profits. On the other hand, the overtime premium also indicates how much an employer is willing to pay to maintain the same level of production. Thus, if overtime employment is not used, the overtime premium also represents lost employer profits due to lost production. Thus while productivity remains at the same level, the distribution of income between wages and profits changes36. For this study it is assumed that the overtime rate is 40%37.

Average employment rates and AWE are based on ABS data for all calculations on productivity losses (see Appendix 3).

6.2.2 LONG RUN PRODUCTIVITY LOSSES

The economic cost of long run productivity losses (premature workforce separation and premature mortality) are estimated using the human capital method.

The human capital method estimates production losses based on the remaining expected lifetime earnings for the individual.

A full economic analysis of the effects of a disease on the economy would also examine the long-run situation where the lost productive capacity of the labour force (incurred via the worker or the employer) is passed onto society through adjustments in wages and prices. However, this study assumes that, in the absence of the disease, PWP would participate in the labour force and obtain employment at the same rate as other Australians, and earn the same average weekly earnings. The implicit and probable economic assumption is that the numbers of such people would not be of sufficient magnitude to substantially influence the overall clearing of the labour market.

The following methodology is used to estimate lost long run productivity costs.

� The expected retirement age by the current age of the worker is calculated based on the participation rates at each age group. Similar to life expectancy, the older the person, the less time it is expected the person will remain in the workforce but the older they are when they do leave the workforce. Note that this methodology takes into account the probability that the PWP is working.

� As the person ages, the annual income (based on AWE) is multiplied by the average employment rate at each age group while alive. Income earned at each age is then summed to calculate the expected total income over a person’s lifetime (discounted back to present values) (see Appendix 3).

36 While the opportunity cost of any overtime employment of another employee is implicitly taken into account through the overtime premium, this methodology does not allow for the choice to use salaried or part-time employees to make up the production at ordinary or no additional wage costs. However, given that workers are assumed to value their leisure time at 30% of their earnings, the difference in estimated economic costs if this choice is taken into account would be small – the only difference would be that “society” would incur these costs rather than the “employer”. 37 Based on the lower bound of workplace injuries literature – the former National Occupational Health and Safety Commission (now the Office of the Australian Safety and Compensation Council - OASCC) assumed an overtime rate of 40% (Access Economics 2004) and the Industry Commission (1995, p 115) assumed an overtime rate of 50%, citing the work by Oxenburgh (1991) who suggested an overtime rate of 50% to 100%.


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Consequently:

� For permanent disability: the expected remaining lifetime earnings are reduced by the percentage reduction in employment during the period the individual has a lower level of employment.

� For premature death: the entire expected remaining lifetime earnings for the individual are lost. The productivity costs of premature mortality are allocated to the year that the person died.

6.2.3 ADMINISTRATIVE COSTS

The employer also incurs administrative costs associated with short run and long run productivity costs.

� Processing employees who take time off work – each day a PWP is temporarily absent from work it is estimated that 30 minutes of management time is lost processing those absent employees38. This includes the time of line managers in rearranging work and the time of back office personnel. The value of managers’ time is $33.7 per hour (AWE divided by hours worked per week of managers in ABS 6310.0).

� Search, hiring and training replacement workers – premature retirement and premature mortality results in increased employee turnover costs. These costs are estimated to be equal to 26 weeks salary of the incumbent worker (Access Economics, 2004). However this cost is merely ‘brought forward’ a number of years because there would be some normal turnover of PWP – approximately 15% per annum (which implies that people change jobs, on average, approximately once every 6.7 years (Access Economics, 2004b).

6.3 PRODUCTIVITY COSTS SUMMARY

The estimated productivity cost of PD in 2005 was a round $55.2 million , of which the most expensive source of productivity loss was premature workforce separation.

TABLE 6-4 SUMMARY OF PRODUCTIVITY COSTS ($M)

Productivity Cost ($m) Temporary absenteeism from work (including management time) 15.3 Premature workforce separation 33.1 Premature mortality* 6.8 Search, hiring and training costs 0.02

Total 55.2 *Includes half of deaths associated with PD.

However these costs are an underestimation of the total productivity cost as they do not include the long-run lost unpaid work due to PD – such as housework, yardwork, childcare and volunteer work.

The average productivity cost was around $1,000 per PWP; however productivity costs differed significantly by disease stage, age and sex (see Figure 6-2 and Figure 6-3).

38 The HSE (1999) assume that administrative costs associated with dealing with absences (such as the calculation and payments of benefits, processing of sick leave and extra management time) equates to an average of 30 minutes per day of absence.


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FIGURE 6-2 PRODUCTIVITY COSTS PER PWP ($), BY AGE AND SEX

-

1,000

2,000

3,000

4,000

5,000

6,000

7,000

8,000

9,000

25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

Age

Pro

duct

ivity

Cos

ts (

$)

Males

Females

FIGURE 6-3 PRODUCTIVITY COSTS PER PWP ($), BY DISEASE STAGE

400 400

2,100

1,700

1,500

-

500

1,000

1,500

2,000

2,500

I II III IV V

Disease Stage

Pro

duct

ivity

Cos

ts (

$)

Productivity costs are shared between the worker, the employer and governments (through tax losses). Post-tax:

� Workers : The productivity cost of PD borne by workers was around $26.6 million ($500 per PWP) – largely consisting of lost remaining lifetime earnings due to premature mortality and reduced lifetime earnings of survivors.

� Employers : The productivity cost of PD borne by employers was around $8.3 million ($200 per person) – largely consisting of overtime and management costs of temporary absenteeism, and search, hiring and retraining costs of workers that leave paid employment.


57

� Governments : The productivity cost of PD borne by the government was around $20.3 million ($400 per person) – entirely consisting of lost taxation revenue.

FIGURE 6-4 DISTRIBUTION OF PRODUCTIVITY COSTS

Incurred by Employer

15%

Government (Lost Taxes)37%

Incurred by Employee

48%


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7. INFORMAL CARE COSTS

The impact of PD on the ability to perform everyday tasks, mental health, cognitive and social functioning and the ability to communicate to others, progressively restricts the PWP’s independence and leads to increasing dependence on carers – either from family carers or though the community care sector. Role changes within families are not uncommon. Other family members often may assume tasks previously the responsibility of the PWP, including gardening, housework, driving, shopping, childcare, handling finances, motor vehicle maintenance, and entertaining at home. This may mean the acquiring of appropriate skills by the carer. Children may also have to assume a ‘parental’ role in caring for a parent with PD.

Many studies identified in the literature review examined the ability of PWP to perform activities of daily living (ADLs). Bathing and walking are typically identified as the ADLs with which PWP have the most problems (Whetten-Goldstein, 1997, and Rubenstein, 2001) and many PWP also experience difficulties eating (Whetten-Goldstein, 1997)39 (see Table 7-1).

TABLE 7-1 ACTIVITIES OF DAILY LIVING (% EXPERIENCING PROBLEMS)

Whetten-Goldstein Rubenstein Walking 60.0 30.2 Dressing 32.1 Eating 60.6 Sitting 16.7 Bathing 70.6 34.9 Getting out of Bed 43.1

As PD progresses PWP increasingly require help with their ADLs (see Table 7-2).

TABLE 7-2 ABILITY TO PERFORM ACTIVITIES, BY DISEASE STAGE (% OF PWP)

1 or 1.5 2 2.5 3 4 Activities of Daily Living

Difficulty with at least one 25.0 48.7 72.0 64.3 27.3

Help with at least one 0.0 2.6 2.0 25.0 72.7 Inability to perform certain activities 33.3 54.7 62.2 78.6 81.8

Note: Given the definition of Stage V, it is assumed that 100% of PWP in Stage V require help.


PD carers tend to be the similarly aged spouses of the PWP (or sometimes grown up children) and thus PD carers are older on average (66 years (Dunn and Hammond, 1999)) than the typical carer in Australia (47.6 years (Access Economics, 2005a)). Consequently the age/sex distribution of PWP receiving informal care is likely to match the age/sex distribution of carers.

39 Rubenstein (2001) found that 46.5% of PWP had difficulties with at least one of the ADLs. Similarly, Le Pen found that 50% of PWP required help to perform their ADL.


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7.1 NUMBER OF CARERS OF PWP

SDAC found that there were 6,900 primary carers of PWP in 2003 40 – equivalent to around 7,300 carers in 2005 41.

The number of carers by age, sex and disease stage (which is required to estimate the opportunity cost of their time) is based on:

� The number of primary carers is assumed to be equal to the total number of PWP requiring care (i.e. a one-to-one relationship) (based on Table 7-2).

� As many PWP requiring help with ADLs are older and already receive help in a high-care residential setting (especially those in later stages of the disease – see Section 2.5.2), the number of people receiving care in a high-care residential setting must be excluded (as estimated in Section 3.4).

� The number of PWP requiring assistance by age, sex and disease stage is scaled down by 0.9 (10%) so that the total number of people requiring assistance matches SDAC.

Overall, around 1,200 carers were of working age.

PWP in Stage IV were more likely to receive informal care than all of the other stages due to the high level of disability at this stage and their lower likelihood of receiving help in a high-care residential setting.

TABLE 7-3 CARERS OF PWP, BY DISEASE STAGE

Disease Stage Number of Carers Carers per 100 PWP Stage I 0 0 Stage II 300 2 Stage III 2,700 22 Stage IV 3,600 50 Stage V 700 22

Total 7,300 13

7.2 TIME SPENT CARING FOR PWP

Several studies surveyed the amount of informal care received by PWP, unfortunately none of these studies are Australian-based (and often cultural factors play a major role in whether the individual or Governments provide care) and are often very small scale surveys42:

� Whetton-Goldstein (1997) surveyed 109 PWP in the US and found that informal care was received by 34% of the survey respondents (45% in poor health and 24% in good health), with the carer providing an average of 22 hours of care per week (with the average age of the carer being 69 years).

40 This is an underestimate of the number of carers due to the lower likelihood of identifying PWP. 41 Based on growth in the prevalence of PWP between 2003 and 2005. 42 Unfortunately, due to the way the SDAC data was collected (from the point of view of the primary carer rather than the PWP) it is not possible to estimate who the carer was or how many hours of informal care was provided (the standard errors are too high).


60

� Hagell (2002) surveyed 127 PWP in Sweden and found that each PWP received 3.8 hours of professional home care and 7.6 hours of care from family members per week.

As the range of informal care hours provided is large, no sensible conclusions can be drawn. Instead the average number of hours provided per week for Australian primary carers in general (33.5 hours) will be used (Access Economics, 2005a).

Carers provided around 12.7 million hours of care i n 2005 – equivalent to around 231 hours per PWP.

7.3 ESTIMATING THE COST OF CARE

As there are insufficient data to control for comorbidities (in SDAC most PWP experience another chronic disease), it is not known whether the PWP would have received informal care due to another chronic disease, regardless of the presence of PD. Consequently the estimated costs of informal care should be interpreted as costs associated with PD rather than costs due to PD.

It is too often the case that the cost of informal caring is underestimated and undervalued because it is not formally remunerated. However as informal caring involves time which would otherwise be directed to other activities such as paid work or leisure, informal care does use economic resources. There are three potential methodologies which can be used to place a dollar value on the time spent providing informal care:

� The opportunity cost method – measures the formal sector productivity losses associated with caring, as time devoted to caring responsibilities is time which cannot be spent in the paid workforce;

� The self-valuation method – measures that carers themselves feel they should be paid; and

� The replacement cost method – measures the cost of “buying” an equivalent amount of care from the formal sector, if the informal care were not supplied.

Access Economic (2005) estimated the value of all of the time spent providing informal care in Australia using the opportunity cost and the replacement cost methodologies. For this study the opportunity cost method is used to ensure a conservative estimate of the value of informal care for PWP, adjusted for the demographics of who provides the care. In Section 12.3 cost estimates using the replacement cost method are presented.

Overall in 2005, informal care provided to PWP cost around $5.4 million, or $100 per PWP.

� Carers (post-tax) bore around $3.4 million ($60 per PWP) while the government bore the remaining costs through lost taxation revenue.

� The cost of informal care is the highest for PWP in Stage IV (around $370 per PWP) due to the higher likelihood of requiring care but not yet in a nursing home.

7.4 ADDITIONAL COSTS OF INFORMAL CARE

In addition to the time spent caring, additional financial costs are incurred through:

� Foregone taxation, carer payments and allowances an d associated deadweight losses – the government loses potential income tax revenue through the time spent by


61

carers not in the paid workforce. The government also loses indirect tax revenue through the reduced consumption patterns through the carer’s decreased income. Carers also may be eligible for carer payments and allowances. Therefore the government must raise the lost tax revenue plus the additional revenue for payments and allowances through taxing other individuals in the community, leading to economic distortions or ‘deadweight losses’. These costs are estimated in Section 9.

� Other support programs for carers – Many carers juggle caring for PWP with other responsibilities and commitments, such as employment and childrearing. Caring can be both physically and emotionally draining, and often carers require the occasional break. Furthermore due to the older age of carers of PWP, many carers also live with their own illness or disabilities. The Living with Parkinson’s Disease in the Central West of NSW study found that:

�� 22% of carers had a major illness in the previous year, 46% currently had a physical disability of some kind, and 32% rated their health as only fair to poor.

�� 54% of carers had been admitted to hospital at some stage while caring for the PWP, and 27% of these carers did not arrange any alternative care for the PWP while they were away.

The Federal Government provides additional support for carers through the National Respite for Carers Program, Commonwealth Carer Resources Centres and the National Carer Counseling Program. These costs are estimated in Section 8.2.2.

Health and Wellbeing Impacts on Carers

Informal care can have other indirect costs, through the impact of caring responsibilities on the health and wellbeing of the carer. SDAC explored the effects of primary care responsibilities on the carers’ health and relationships (ABS 4430.0.55.003):

� Only just over a quarter (25.7%) of all primary carers reported that they felt satisfied with their caring role (implying that three quarters were not satisfied). A further 29% felt that caring had adversely affected their wellbeing.

� 44.5% of all primary carers report that their sleep is interrupted due to the requirements of their caring role, which results in additional costs through fatigue-related motor vehicle accidents, work-related injuries, depression, diabetes and cardiovascular disease.

� 72.4% of all primary carers experience some form of physical or emotional effect from providing care. The most common is feeling weary or lacking energy (33.7% of primary carers). 29.2% often feel worried or depressed and 28.9% feel their wellbeing has been affected. Over 10% of primary carers have a stress related illness.

�� Clinical studies have also shown increased rates of depression among caregivers, compared to control populations (Spector and Tampi, 2005). Depression is a particularly costly condition, accounting for the largest share of Australia’s disability burden measured by years of healthy life lost due to disability (Mathers et al, 1999).

� The majority of carers report that caring has had an impact on their relationships with the person they care for and other family or friends. This impact may be either positive or negative. For example, around 18% of primary carers report that the relationship between themselves and their main recipient of care has been strained. This is most likely to be reported by carers between the ages of 35 and 64 years of age. However a much larger proportion of primary carers (34%) felt that the caring role had brought themselves and the care recipient closer together.


62

As well as emotional impacts, caring can also cause physical injury, especially musculoskeletal injuries from incorrectly lifting, lowering, carrying or moving the recipient of care. A 1999 survey into the wellbeing of carers conducted by Carers Australia found that 33% of all carers reported having being physically injured at least once in the course of providing care, of which over a half were due to lifting or carrying the PWP or other objects (Carers Association of Australia, 2000). Similar results have been found in overseas studies (Carers UK, 2004).


63

8. OTHER FINANCIAL COSTS

In addition to productivity costs, there can be other less burdensome (but still material) costs, such as the costs of respite for informal carers and formal care, mobility aids, modifications to the homes of PWP, travel and accommodation costs to health services, other government programs and funeral costs.

These cost categories should not be considered separately – they form part of a complex system where some costs are incurred in order to offset another cost of PD. For example: the costs of mobility aids and modifications to the home are incurred to increase the individuals’ independence and thus decrease productivity and carer costs.

Improved diagnosis would lengthen the window of opportunity for preventative or protective treatments, thus reducing all of these costs in the long run.

8.1 OUT-OF-POCKET EXPENSES

Use of Aids and Modifications

In the early stages of the disease many PWP are able to perform their activities of daily living and remain independent. However as symptoms worsen over time their ability to perform these activities becomes restricted (such as getting in and out of a bathtub, standing up from a chair, or walking). Aids and modifications help PWP in performing these activities and remain independent for as long as possible.

Many of these costs are out-of-pocket expenses borne by the individual and their family, however there are a number of public programs for older people, people with a disability and their families and carers to assist them to make home modifications and provide aids and equipment that will help them to remain living in their own home.

� The Home Maintenance and Modification Program is funded by the Commonwealth and State Governments under the HACC program, with two levels of assistance.

� The Program of Appliances for Disabled People (PADP ) provides equipment and appliances to disabled people and some others, who are financially disadvantaged.

� The Independent Living Centre is a non-profit organisation that provides information about equipment, building design and other resources, as well as a display centre for people to view and sample a wide range of products.

� The Continence Aids Assistance Scheme (CAAS) is a Federal Government program that subsidises the cost of continence aids ordered through Intouch (A Division of PQ Lifestyles Limited) for people who have permanent and ongoing incontinence.

SDAC found that 27% of PWP with a disability used a mobility aid (2.5 times the general population) (see Table 8-1), while several studies examined the specific types of aids and modifications used by PWP in the US (see Table 8-2).

After controlling for co-morbidities, Rubenstein (1997) found that PWP were:

� more likely to use: grab bars or railings; walker, canes or crutches; shower seats or raised stools; raised toilets; portable toilets; and wheelchairs, but


64

� not more likely to make modifications to the house or car compared to the general population.

Working backwards from the odds ratio and the average usage rate for each type of aid by PWP, the usage of each aid in the general population can be estimated, and thus the additional usage of each aid by PWP can be estimated (see Table 8-2).

TABLE 8-1 USE OF MOBILITY AIDS BY PERSONS WITH A DISABILITY

PWP Non-PWP Difference T-Stat Male 19% 7% 183% 3.85 Female 47% 9% 449% 8.62

Persons 27% 8% 248% 7.04 Source: SDAC, special request.

TABLE 8-2 USE OF AIDS AND MODIFICATIONS BY TYPE

Use of Aids and Modifications (%)*

Average Additional Usage

C R W Usage** OR** Modifications to house or car 15% 18.6%*** Aids and special equipment 64% 28% (1.6) By Type Walker, cane or crutches 28% 38.1% (3.2) 40.2% (2.2) 33.3% 2.6 17.3% Wheelchair 38.1% (3.2) 32.6% 2.8 18.0% Grab bars or railings 40% 21.4% (2.8) 30.7% 2.8 17.0% Shower seats or raised stools 20% 23.8% (7.3) 21.9% 7.3 18.2% Raised toilet 19.1% (7.7) 19.1% 7.7 16.1% Portable toilet 11.9% (5.0) 11.9% 5.0 9.3% Velcro fasteners 4.8% 4.8% Special underwear 11.9% 11.9%

C: Chrischilles (1998)

R: Rubenstein (1997)

W: Whetten-Goldstein (1997)

* Odds ratio in brackets

** Includes use of mobility aids from SDAC in use of walker, cane, crutches, and wheelchairs.

*** Not statistically significant.

Chrischilles (1998) found that the use of aids and modifications increased with disease stage, even after controlling for co-morbid conditions. The ratio of usage to the average rate can be applied to the additional usage rates.

TABLE 8-3 USE OF AIDS AND MODIFICATIONS (% OF PWP), BY DISEASE STAGE

Disease Stage: I II III IV Average Aids and special equipment (%) 42.9 60* 92.9 100 64.3 Ratio to Average 0.67 0.93 1.44 1.56

*Weighted average of Stages 2 and 2.5


Hely (2005), an Australian study, found that urinary incontinence became more frequent with increasing disease stage – from 14% in Stage II to 62% in Stage V. While no PWP were catheterised, some used urodomes or pads.


65

Estimating the Cost of Aids and Modifications

Many older people may be using aids or making modifications to the home due to other co-morbidities (such as the use of mobility aids for people with musculoskeletal diseases) and consequently only the additional use of these aids due to PD is estimated.

TABLE 8-4 AVERAGE COST OF AIDS PER YEAR, BY DISEASE STAGE

Aid Average Cost per Year

Additional Usage by Disease Stage

($) I II III IV V Walker, cane or crutches 80 12% 16% 25% 27% 27% Wheelchair 1,000 12% 17% 26% 28% 28% Grab bars or railings 25 11% 16% 25% 27% 27% Shower seats or raised stools 43 12% 17% 26% 28% 28% Raised toilet 60 11% 15% 23% 25% 25% Incontinence Pads 80 0% 14% 30% 46% 62% Wheelchair Maintenance 1,000 12% 17% 26% 28% 28%

Average Cost per Year ($) 150 616 1,199 1,689 2,155 As modifications to the house or car are not-statistically significant compared to the general population, no additional costs for modifications are estimated.

The average cost and expected longevity of the aid is calculated using cost information from the Sun Medical Equipment Centre43. An additional 5% for wheelchair maintenance is assumed.

Source: Access Economics (2006)

Use of Formal Care, Accommodation and Travel Costs

In the early stages of the disease many PWP are able to perform their activities of daily living and remain independent. However as symptoms worsen over time their ability to perform these activities becomes restricted. Additional assistance to supplement informal care already provided by family and friends may be needed (particularly for those with limited access to extended family and friends). For example:

� childcare;

� housekeeper;

� gardener;

� shopping (delivery etc); and

� private nursing not covered by private health insurance or the government.

Many of these costs are out-of-pocket expenses borne by the individual and their family; however there are a number of public programs for older people, people with a disability and their families and carers to provide additional care that will help them to remain living in their own home (see Section 8.2).

Travel and accommodation costs are particularly burdensome for regional and remote PWP travelling to metropolitan areas to attend appointments or obtain medications, which can be frequent and costly. Depending on the level of disability, a carer may also need to accompany the person. Furthermore, appointments to specialists may also require several nights away from home – thus accommodation costs are also incurred. However, even if the

43 http://www.sunmedical.com.au/


66

medical treatment is available locally, travel costs can still be substantial in terms of both distance and time.

Out-of-pocket expenses for travel costs can include:

� petrol, road tolls, additional car maintenance, taxi, train bus and airplane fares;

� accommodation costs for both the PWP and/or family at hotels/hostels near the treatment facility (although some out-of-town PWP may be able to stay with friends or family);

� additional meal costs; and

� item duplication, luggage and clothing.

Unfortunately, the literature review did not identify any Australian studies that examined the additional formal care, travel and accommodation costs due to PD. However a recent German study estimated that home help/social services and transportation cost an additional 0.6% (€20 out of €3360) compared to total medical costs incurred by the Gesetzliche Krankenversicherung (the statutory health insurance authority) (see Table 8-5). However, this does not include the PWP’s contribution to these costs.

TABLE 8-5 COST OF FORMAL CARE AND TRANSPORT COSTS (€ PER PWP)

Cost Mean Cost per 6 months % of Total Direct Costs Home Help and Social Services 10 0.3% Transportation 10 0.3%

Source: Spottke et al (2006)

Summary

Many PWP are older and already receive help in a high-care residential setting and thus do not pay for many aids and modifications, formal care, accommodation and travel costs. Thus to estimate the proportion of people incurring these types of costs by age, sex and disease stage (and to avoid double counting with health system costs) the proportion of people receiving care in a high-care residential setting must be excluded.

Based on Access Economics Aged Care Dynamic Cohort Model, the proportion of people likely to be receiving care in a high-care residential setting is estimated based on the age-sex distribution in each disease stage. The remaining PWP not in a high-care residential setting incur aids costs as contained in Table 8-4, and formal care, accommodation and travel costs as contained in Table 8-5.

Overall PWP spend around $670 on aids per person pe r year, on average, and around $20 on formal care, accommodation and travel costs per person per year, on average.

� Overall this represents around 11% of total health system costs per year.

In comparison, Spottke (2006) estimated that special equipment cost an additional €420 (A$617 in 2005 dollars), or around 12.5% of total health costs incurred by the Gesetzliche Krankenversicherung. However, this does not include the PWP’s contribution to these costs.

Findley (2003), a UK study, also estimated private expenditure costs including: private residential/nursing home, private care at home, equipment purchase, travel expenses to hospital/surgery, additional laundry, heating or lighting costs, incontinence aids, extra help in house/garden, local home care schemes, other home services (e.g. dentist, hairdresser etc),


67

and miscellaneous. The study found that private expenditure was around ₤1,681 (73% of total health costs) and nine times higher for PWP in Stage V compared to PWP in Stages I and II. However this difference in private expenditure is largely driven by including private residential care (nursing home) fees.

8.2 GOVERNMENT PROGRAMS

8.2.1 PALLIATIVE CARE

Palliative care is the specialised care provided for people who are dying from active, progressive and far-advanced diseases, with little or no prospect of cure. The aim of palliative care is to achieve the best possible quality of life, both for the person who is dying and for their family (AIHW, July 2003, and DoHA, October 2000: 4).

Services are provided by both government and non-government organisations, delivered by family and friends, general practitioners and palliative care specialists, and provided in:

� inpatient units, hospices, residential and aged care facilities; and

� in the homes of PWP (supported by community-based programs and consultancy services).

State and Territory governments have the primary responsibility for management of palliative care services in Australia, while the Federal government has an oversight role (responsible for planning and strategy).

For the 1998 census conducted by Palliative Care Australia, palliative care programs were broken down into five classifications (community, inpatient, consultative (hospital), outpatient clinic, day centre). On November 18 1998 (Census day) it was estimated that 11,902 people were registered in palliative care programs44, most of whom had cancer as a principle diagnosis.

TABLE 8-6 PALLIATIVE CARE SERVICES PROVIDERS, 1998

Proportion of Service Providers providing

Program

Proportion of People Registered in Palliative Care Programs

Inpatient 49% 12%* Outpatient 19%

Day 10% Community 78% 78% Consultative 45% Unknown 10%

* Inpatients of hospices and hospital consultancy programs

Source: Palliative Care Australia (November 1998: 7, Table 2.1, and 22-23).

McNamara et al (2004) examined the use of specialist palliative care by people in Western Australia with non-cancer diagnosis. The study found that only 4.1% of people who died from PD received specialist palliative care (see Table 8-7).

44 The total palliative care population at a single point in time is expected to be lower than this as it was possible for individuals to be simultaneously registered for more than one program.


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TABLE 8-7 SPECIALIST PALLIATIVE CARE RECIPIENTS BY PRIMARY DIAGNOSIS

Deaths % Who Received Specialist

Palliative Care

People Who Received Specialist

Palliative Care

% of Total

Cancer 7,399 68% 5,009 87.1% Non-Cancer 5,446 8% 447 7.8% PD 169 4% 7 0.1% Other 5,277 8% 440 7.6%

Both 608 48% 293 5.1%

Total 13,453 43% 5,749 100.0%

Palliative care in Australia is funded from a range of sources, including the Federal government, State and Territory governments, health funds, private donations and fundraising. According to the National Palliative Care Plan Initiative, Final Report of 2003, palliative care service providers received their funding (primary source) from45: government sources (91.8%), private sources (eg health funds) (5.5%) and donations and in-kind support (2.7%).

Federal government funding for palliative care comes under the National Palliative Care Program, and is guided by the National Palliative Care Strategy. The total Federal government funding for the National Palliative Care Program in 2005 was approximately $60 million, of which $56,800 was for the palliative care of PWP – assuming that the cost of palliative care is the same across all disease diagnoses.

TABLE 8-8 FEDERAL GOVERNMENT FUNDING FOR PALLIATIVE CARE

Total Funding Funding in 2005 (Approx.)

Australian Health Care Agreements (AHCA) $201.2 million over five years (2003-2008) 40.2

Palliative Care in the Community $55 million over four years (2002-2006)

13.8

Local Palliative Care grants program $23.1 million over four years (2005-2009) 5.8

Total Funding 59.8 Source: DoHA (December 2005)

This estimate would underestimate the total funding for palliative care, as it does not include contributions from State and Territory governments and private sources.

The AIHW estimates of health costs in Section 5 already include the costs of palliative care services provided in hospitals and hospices, but not community palliative care services. Consequently to avoid double counting, only 78% (from Table 8-6) of these costs are attributed to community based services (assuming the cost of care is the same across services).

In addition to funding, approximately 78% of services reported the use of volunteer services, with each service receiving approximately 35.7 hours per week of volunteer time (Palliative Care Australia, November 1998: 34-35). Thus for the 254 services registered on the

45 Data from respondents to a survey of all service providers listed in the Palliative Care Australia national directory.


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Register of Palliative Care Services held by Palliative Care Australia, around 367,790 hours of volunteer service was provided. Thus in 2005 around 366,900 volunteer hours were provided to palliative care services, worth $9.2 million (valued at a replacement cost of $25.01 per hour (Access Economics, 2005a: 15)) of which $11,200 was provided to PWP.

Consequently the total value of community based palliative care services is $50 per death due to PD.

8.2.2 NATIONAL RESPITE FOR CARERS PROGRAM

Respite for carers of PWP is often required when:

� The carer is undergoing hospital in-patient treatment;

� The burden of caring psychologically overwhelms the carer or PWP;

� Home modifications is being undertaken;

� The carer needs time to shop, socialise, or undertake recreational activities as a break from the burden of caring.

The National Respite for Carers Program (NRCP) provides services for at-home carers of people who are unable to look after themselves due to frailty, disability, or chronic illness (most PWP would eventually fall into this category). These services are provided through three distinct programs (ANAO, 04-05)46:

� Commonwealth Carer Resource Centres (9 Centres),

�� Provide information and advice to carers;

� Commonwealth Carer Respite Centres (89 Centres and outlets),

�� Arrange short term or emergency respite for carers through existing services,

�� Purchase or subsidise (broker) flexible respite care;

� Respite Services (432 providers),

�� Deliver respite and other support appropriate to the individual needs of carers and their dependents.

46 Respite programs for carers of PWP also exist that do not fall under NRCP. For example, respite is one service among many offered under the Home and Community Care Program (HACC).


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FIGURE 8-1 NATIONAL RESPITE FOR CARERS PROGRAM

Source: ANAO (2004–05).

Funding for NRCP was $99.7 million in 2003-04, in $99.2 million in 2004-05 (PC, 2006, Table 12A.49 and Table 12A.46), and is estimated as $134.8 million in 2005–06 with the allocation of funds between the three program parts as presented in Table 8-9, based on the 2003-04 data.

TABLE 8-9 NRCP FUNDING

Funding 2005-06

Estimated Funding

($m)

Carers Assisted

Cost per Carer ($)

Program $m % 2003-04 2003-04 2003-04 2005 Commonwealth Carer Resource Centres 4.7 3% 3.5 42,627 82 96 Commonwealth Carer Respite Centres 46.2 34% 34.2 47,800 715 839 Respite Services 59.5 44% 44.0 28,000 1,572 1,844 Other* 24.4 18% 18.1 Total 134.8 100% 99.73

*A number of other small programs also come under NRCP. A further funding breakdown is not available.

In addition to Commonwealth funding through NRCP, Commonwealth Carer Resource Centres receive funding from the National Palliative Care Program (NPCP) ($3 million per year to assist carers of people with life limiting illness), the Department of Family and Community Services (FaCS) ($5 million each year, to assist carers of young people with severe and profound disabilities) and some State and Territory governments also contribute funding.


The groups targeted by the NRCP and the proportion of services provided to each group is presented in Table 8-10.


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TABLE 8-10 CARERS TARGETED UNDER NRCP FUNDING

% Targeted Carers of people with dementia 28.1% Carers of frail aged people (65 years or over, or 50 and over if Indigenous) 21.9% Carers of people with dementia and challenging behaviours 21.6% Carers of young people (under 65 or under 50 if Indigenous) with moderate, severe or profound disabilities 21.2% Carers of people with a terminal illness in need of palliative care; who are living at home 5.5% Unspecified* 1.7%

However it is possible that actual provision across target groups differs to funding objectives stated above.


According to SDAC, in 2003 there were 474,600 primary carers, of which 6,900 were carers of PWP (1.4%). Currently there is no data regarding the rate of access to respite services by PWP. Assuming that carers of PWP accessed respite services at the same rate and same intensity as other carers, then the total expenditure in 2005 on respite for carers of PWP was $2.1 million, or $280 per carer.

8.2.3 HOME ASSISTANCE PROGRAMS

A number of government programs operate which provide assistance to frail older people and to people with a disability, aimed at allowing them to stay in their homes longer and preventing premature admissions to residential care. Programs detailed below include Home and Community Care (HACC), Community Aged Care Packages (CACP) and Extended Aged Care at Home (EACH), with differences between the three programs summarised in Table 8-11.

The Home and Community Care (HACC) Program is a joint program between the Federal and State/Territory governments to provide a range of support services to older people, people with a disability and their families and carers that will help them to remain living in their own home. Services provided include:

� Administration and coordination of HACC programs:

�� Assessment of needs and determination of eligibility for service provision.

�� Case Management and coordination.

� Additional assistance to supplement informal care already provided by family and friends:

�� Domestic Assistance: such as house cleaning, washing, ironing, shopping, transport etc.

�� Home Maintenance and Gardening.

�� Personal care: such as help with bathing, toilet use, eating, dressing and personal grooming.

�� Respite care: temporary provision of a substitute carer (centre-based, in-home, host family or peer support respite care).

� Provision of goods and services:

�� Pre-made meals (i.e. meals-on-wheels) and other food services (preparation and cooking of meals in the home).

�� Transport services.

�� Aids, equipment and home modifications.

�� Linen service.

� Additional support:


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�� Nursing care: such as home nursing, domiciliary nursing services in community centres, and in-home assistance with continence issues.

�� Allied health services: physiotherapy, occupational therapy, podiatry, dietary and nutritional advice, speech therapy.

�� Social support: companionship at home and for accessing community services and facilities.

�� Centre-based day care: attendance/participation in group activities designed to improve/maintain independence and provide social interaction.

�� Counselling, support, information and advocacy: assistance with understanding and managing situations, behaviours and relationships, and the provision of information, advice and training.

In 2005-06 Federal and State Governments contributed $1.409 billion to the HACC program, however users may be asked to contribute to the cost of the service being delivered (DoHA, April 2006).

The Department of Veterans’ Affairs (DVA) operate a program similar to HACC for veterans and war widows/widowers, the Veterans’ Home Care (VHC) program. This program is targeted to those in the Veterans Community with low care needs. Services include (DVA, August 2006):

� Domestic Assistance: such as with cleaning, grocery shopping and paying bills;

� Personal Care: such as assistance with bathing, eating, toileting, grooming, and dressing;

� Home and Garden Maintenance: such as replacing light bulbs or tap washers, and other tasks necessary to ensure safety and functionality of the home; and

� Respite Care.

These services are provided on an assessed eligibility basis. In 2004-05 74,620 people were granted approval to receive VHC services, and the DVA spent $80.5 million on the VHC program excluding expenditure on in-home and emergency respite home care (PC, 2006: 12.11 and 12.16).

In addition to the HACC program which is aimed at preventing inappropriate residential care admissions, two programs exist which provide a home-based alternative to residential care: CACP for those assessed as having care needs similar to low level residential care; and, EACH for those assessed as requiring high level care.

Community Aged Care Packages (CACP) is a program of the Australia Government, providing integrated packages of care designed to meet complex individual needs. Individuals must be approved by an Aged Care Assessment Team (ACAT) in order to receive CACP services. Services, which are individually tailored and coordinated through a care manager/coordinator, are similar to those available under HACC with the exception of nursing care and allied health care (AIHW, August 2006).

In 2004-05, Australian Government funding for CACP was $323.3 million, providing services for 30,426 individuals. Recipients were required to contribute at a rate of approximately six dollars a day for those on the basic pension, with contribution rates rising with income above the level of the basic pension (PC, 2006: 12.18, and DoHA, August 2006a).


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Extended Aged Care at Home , (EACH) is a small program ($34.3 million in Australian Government funding) which allows for some fail aged people with high care needs to remain in their home. At 30 June 2005 there were 1672 operational EACH places (PC, 2006: 12.7).

Like CACP, EACH packages are coordinated by a care manager, are flexible and tailored to individuals needs, and require an ACAT assessment to determine eligibility. Packages provide a high level of support (typically 15-20 hours per week) including nursing, domestic assistance, in-home respite, personal care, transport and social support (PC, 2006: 12.7, and DoHA, August 2006b).

TABLE 8-11 DISTINCTIONS BETWEEN THE HACC, CACP AND EACH PROGRAMS

HACC CACP EACH Range of servicesa Wide range of

services available Narrower range of services available

Narrower range of services available

Relationship to residential care

Aims to prevent premature or inappropriate admission

Substitutes for a low care residential place

Substitutes for a high care residential place

Eligibility ACAT assessment not mandatory

ACAT assessment mandatory

ACAT assessment mandatory

Funding Cost shared by the Australian, State and Territory governments and client contributions

Funded by the Australian Government and client contributions

Funded by the Australian Government and client contributions

Target client groupsb Available to people with a greater range of care needs

Targets people with care needs similar to low level residential care

Targets people with care needs similar to high level residential care

Size of program $1.3 billion funding in 2004-05 Approximately 744,197 clients in 2004-05c

$323.3 million funding in 2004-05 30,426 operational places in 2004-05

$34.3 million funding in 2004-05 1,672 operational places at 30 June 2005

a HACC services such as community nursing, which are not available under CACPs, can be supplied to someone receiving a CACP. b Most HACC recipients at the lower end of the scale would not be assessed as eligible for residential care — for example, an individual may receive only an hour of home care per fortnight. At the higher end, some people have levels of need that would exceed the level available under CACPs and EACH. c Based on 82 per cent of HACC funded agencies that submitted Minimum Data Set data for 2004-05. Consequently, the total number of clients will be higher than those reported here. Sources: DoHA (unpublished); tables 12A.32, 12A.35, 12A.42 and 12A.43. (PC, 2006: 12.18)

8.2.4 SUMMARY

In 2005, expenditure of PWP through government prog rams was at least $2.1 million , consisting of community based palliative care ($68,000) and respite ($2.1 million). This is a highly conservative estimate as no information is available on the use of HACC, CACP or EACH by PWP.

8.3 FUNERAL EXPENSES

The ‘additional’ cost of funerals borne by family and friends of PWP is based on the number of deaths due to PD. However, some PWP would have died during this time anyway, and eventually everyone must die, and thus incur funeral expenses – so the true cost is the cost


74

brought forward (adjusted for the likelihood of dying anyway). The BTRE (2000) calculated a weighted average cost of a funeral across all States and Territories, to estimate an Australian total average cost of $3,200 per person for 1996, or $3,949 per person in 2005.

Individuals may also incur various costs for legal services, for example transfer of house deeds, living will and so on.

8.4 OTHER FINANCIAL COSTS SUMMARY

Overall, the cost of other financial costs for PWP was around $40.5 million in 2005 , of which the main cost component was aids and modifications (see Table 8-12).

On average the cost per person was around $700 per PWP and peaked in Stage IV before many people were admitted to nursing homes (see Figure 8-2). Individuals bore almost all of these costs (93%).

TABLE 8-12 INDIRECT COSTS OF PD ($M), 2005

Annual Cost ($m) Aids and Modifications 36.5 Formal Care 1.3 Palliative Care 0.1 Respite 2.1 Funeral Costs 0.6

Total 40.5

FIGURE 8-2 INDIRECT COSTS PER PERSON ($), BY DISEASE STAGE

200

600

1,300

1,500

600

-

200

400

600

800

1,000

1,200

1,400

1,600

I II III IV V

Disease Stage

Oth

er F

inan

cial

Cos

ts (

$)


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9. TRANSFERS

Transfer payments represent a shift of resources from one economic entity to another. The act of taxation and redistribution creates distortions and inefficiencies in the economy, so transfers also involve real net costs to the economy.

Transfer costs are important when adopting a whole-of-government approach to policy formulation and budgeting. Transfer costs also allow us to examine the distribution of the costs of PD across different parts of society.

9.1 INCOME SUPPORT FOR PWP

A number of income support payments are available to PWP and their carers, including the:

� Disability Support Pension,

� Age Pension, and the

� Veterans' Affairs Service Pension

Which may be supplemented by the:

� Mobility allowance,

� Rent assistance,

� Pharmaceutical Allowance,

� Seniors Concession Allowance,

� Telephone Allowance, and the

� Utilities Allowance.

NewStart or Sickness Allowance may also be received, but this is likely to be received only in the early stages of the disease and for short periods of time until their cases are reviewed and they are able to receive the Disability Support Pension. Given that the widow allowance is lower than the disability or the age pension, it is likely that these individuals would move over to one of these pensions soon after being diagnosed with PD.

As all people aged 65+ are eligible for the age pension, this section will only focus on people aged less than 65 who would be receiving the Disability Support Pension.

PWP Receiving Income Support

In 1999 the Living with Parkinson’s Disease in the Central West NSW Study surveyed 101 PWP and 69 carers of PWP recruited through local networks of medical practitioners, community-based organisations, hospitals, aged care groups and the local media. The study found that 56% of PWP aged 55 to 64 year received income support, and that this increased with age (see Figure 9-1). This equates to around 5,591 (out of 10,064) PWP aged less than 64 years receiving income support in 2005.


76

FIGURE 9-1 PWP RECEIVING INCOME SUPPORT (% OF PWP)

56%

38%

60%

76%80%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Up to 64 65 to 69 70 to 74 75 to 79 80 plus

Source: Living with Parkinson’s Disease in the Central West NSW Study

In comparison, SDAC estimated that there were 9,200 PWP in 2003 (95% CI: 4,425, 13,975) receiving income support. Centrelink reported that there were 24,203 people receiving the Disability Support Pension for nervous system disorders as of June 200647. Based on Mathers et al (1999) PWP represented 12.3% of all people with nervous system disorders aged 15 to 64 (although this study significantly underestimated PWP aged below 64). Assuming that people with nervous system disorders are equally likely to access DSP, then there were around 2,967 PWP receiving the DSP.

Total Payments to PWP

Of the range of support available, only the DSP is costed here, as it is likely to be the largest cost item.

In June 2005 there were 706,782 people in Australia who were listed to have received the Disability Support Pension at a total cost of $2,505.2 million in 2004-05, or $3,545 per person (Centrelink special request and FACS, 2004-05). Thus around $19.8 million in DSP payments were paid to PWP in 2005.

However, some of these people would have received DSP payments even in the absence of PD, which must be netted out to estimate the additional welfare payments due to PD, using a Melbourne University study (Tseng and Wilkins, 2002) about the ‘reliance’ of the general population (aged 15-64 years) on income support.

47 Although not all people would list nervous system disorders as their reason for receiving the Disability Support Pension. Furthermore some people in the early stages of PD may be coded under disabilities of the upper or lower limbs. However the DSP for these people are reviewed every three to five years, after which they would be recoded to nervous system disorders.


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TABLE 9-1 WELFARE PAYMENTS TO PWP, 2004-05

Average Reliance (%) Males Females Persons* Additional Payments ($m)

Disability Support 10.2 14.9 12.0 17.5

* Weighted average based on statistics of demographics of income support customers

Sources: FACS (2006) and Tseng and Wilkins (2002)

Thus around $17.5 million in additional welfare pay ments are paid to working age PWP – or $1,700 per working age PWP.

9.2 INCOME SUPPORT FOR CARERS OF PWP

There are two main income support measures available to primary carers:

� Carer Payment is a means-tested income support payment payable to people who cannot work full time because they provide home based care to an adult or child who has a severe and long-term disability or health condition, or the equivalent amount of care to a number of less disabled people48.

� Carer Allowance is a non-means tested income supplement for people who provide daily care to an adult or child with a severe and long-term disability or health condition.

In 2005 around $2,012.7m was paid to carers in the form of the Carer Payment and Carer Allowance and 1.22 billion hours of care was provided (Access Economics, 2005a) (see Table 9-2).

TABLE 9-2 TOTAL COST OF INCOME SUPPORT TO CARERS, 2005

Av. Weekly payment#

No. of recipients

Total cost per annum

($m)

Hours of Care (m)

Cost per Hour

Carer Payment

$215.65 87,461 982.6 908* $1.08*

Carer Allowance

$63.98 309,030 1,030.0 1,220** $0.84

Total 2,012.7 * Carers aged 15 to 64 year olds. Carers from 65 onwards are likely to already be receiving another form of payment.

** All carers are eligible for the carer allowance.

Source: Access Economics (2005a)

A large number of primary carers may instead receive an age pension or disability support pension (DSP), which is paid at the same rate as the Carer Payment (Access Economics, 2005a). However, since in most cases age pensions and DSP are likely to be paid regardless of whether the person is caring, they are not included in the cost of welfare transfers for caring for PWP. Furthermore, any carer payments and allowances received can only be considered associated with PD rather than due to PD, as they may have cared for the PWP anyway due to another chronic disease.

48 The PWP must also be in receipt of an income support payment.


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Around $12.9 million was provided to carers of PWP in 2005, or $240 per PWP – based on the total amount of hours of care provided and assuming that carers of PWP receive the Carer Payment or Allowance at the same rate as the general carer population for the period for which care is required (i.e. while the person has PD).

Death of a loved one with PD often brings additional financial hardship on the carer through the loss of the PWP’s pension and through legal/funeral costs. To assist with these costs the carer may be eligible to receive:

� Bereavement Allowance - Available after the death of the loved one and the carer is not in receipt of another pension, benefit or allowance (paid for up to 14 weeks from the date of death of the partner).

� Bereavement Payment – Available after the death of the loved one and the carer is in receipt of an eligible pension, benefit or allowance. Either paid as: a lump sum equivalent to seven payments of the difference between the couple and single rate of the pension, benefit or allowance received; or the carer receives the Carers Payment for a further seven payments after the person cared for has died.

9.3 OTHER AVENUES OF FINANCIAL SUPPORT

There are various other avenues to receive financial support, which include:

� Payments from the Department of Veterans Affairs – In addition to support from Centrelink, some people may be eligible to support payments and health services from the Department of Veterans Affairs.

� Early Access to Superannuation – In general, superannuation is ‘preserved’ in a fund or retirement savings account (RSA) until the person retires from the workforce after age 55 years. However early release of preserved superannuation benefits is permitted in certain restricted circumstances (APRA, April 2005):

�� Financial hardship (aged under 55 years and 39 weeks): in receipt of a Commonwealth income support payment continuously for the last 26 weeks, and unable to meet reasonable and immediate family living expenses. The fund or RSA can release one lump sum payment more than $1,000 and less than $10,000 (or the balance of your benefit if it is less than $1,000).

�� Financial hardship (aged over 55 years and 39 weeks): in receipt of a Commonwealth income support payment for a cumulative period of 39 weeks after reaching age 55 years, and not employed on a full-time or part-time basis. The fund or RSA can release the entire benefit.

�� Specified grounds for release to cover expenses for49: - medical treatment for the member or their dependant where necessary to

treat a life threatening illness or injury, or to alleviate pain or mental disturbance, and where such treatment is not readily available through the public health system;

- medical transport for the member or their dependant to access treatment necessary to treat a life threatening illness or injury, or to alleviate acute/chronic pain or acute/chronic mental disturbance;

49 It is also possible to have an amount released to prevent foreclosure of a mortgage, or exercise of a power of sale over the member's principal place of residence.


79

- modifications to the family home and/or vehicle to meet the special needs of a disabled member or his/her disabled dependant; or

- palliative care or death, funeral, or burial expenses for a member or his/her dependant.

�� Release of benefits to members requires approval from Australian Prudential Regulatory Authority (APRA).

� Private Health Insurance, Life Insurance and Income Protection Benefits – Through various insurance schemes, some people may be covered by insurance for the cost of health services, formal care, funeral expenses, and compensation for lost income due to PD.

� Travel Assistance Schemes – provides some financial assistance towards travel and accommodation costs for specialist medical not available locally if the patient needs to travel more than a certain distance. Assistance with escort costs may be available. A personal contribution of may be required. Examples of these schemes for each State/Territory include:

�� New South Wales Isolated Patients’ Travel and Accommodation Assistance Scheme (IPTAAS)

�� Victorian Patient Transport Assistance Scheme (VPTAS)

�� Queensland Patient Travel Subsidy Scheme

�� South Australia Patient Assistance Transport Scheme (PATS)

�� Western Australia Patient Assistance Transport Scheme (PATS)

�� Tasmania Patient Travel Assistance Scheme (PTAS)

�� Northern Territory Patient Travel Scheme (PTS)

� Pharmaceutical Benefits Scheme (PBS) – reduces co-payments on medicines listed on the PBS is available if a certain amount of expenditure is reached:

�� Co-payment per script of $4.70 for concession card holders, up to a Safety Net maximum of $253.80 per year (around 52 prescription medicines), after which the rest is free.

�� For everyone else, a maximum co-payment per script of $29.50, up to the safety net maximum of $960.10 per year, after which the rest are $4.70.

� Telephone and Utilities – Various telephone and utility companies offer temporary relief and on-going discounts for customers experiencing financial hardship.

� Charities – A number of charities provide financial assistance to individuals and families in need.

9.4 TAXATION REVENUE

PWP and their carers in paid employment, who have left the workforce temporarily due to caring responsibilities, or permanently due to premature retirement or death, will contribute less tax revenue to the Government. This lost value in wages and firm output was calculated in Sections 6 and 7. Pre-tax:

� PWP lost $42.1 million in wage income due to long-term lost earnings and premature death;

� Carers lost $5.4 million in wage income due to caring for PWP;


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� Employers lost $13.1 million in production value on account of absenteeism of the carer, lost management productivity in managing the absenteeism, and direct worker hiring and retraining costs.

In terms of allocating these losses to either personal income or company income, we only included the employer losses as lost company revenue, with the remainder allocated as lost personal income in one form or another. The average personal income tax rate is 21.20% and the average indirect tax rate is 15.51%, based on the Access Economics Macroeconomic model (AEM). Furthermore the vast majority of company income is distributed to domestic shareholders (as franked dividends) and thus the income is charged at the relevant personal tax rate (Access Economics, 2004b).

Together these calculations generate a total loss o f tax revenue of $22.2 million. This represents taxation lost that must be collected from remaining citizens (given no change in expenditure – i.e. small tax changes are unlikely to change the level of demand for expenditure).

9.5 DEADWEIGHT LOSS OF TAXATION PAYMENTS AND ADMINISTRATION

As discussed earlier, transfer payments (Government payments/services and taxes) are not a net cost to society, as they represent a shift of consumption power from one group of individuals to another in society. If the act of taxation did not create distortions and inefficiencies in the economy, then transfers could be made without a net cost to society. However through these distortions taxation does impose a deadweight loss on the economy.

Deadweight loss is the loss of consumer and producer surplus, as a result of the imposition of a distortion to the equilibrium (society preferred) level of output and prices. Taxes alter the price and quantity of goods sold compared to what they would be if the market were not distorted, and thus lead to some diminution in the value of trade between buyers and sellers that would otherwise be enjoyed. The principal mechanism by which a deadweight loss occurs is the price induced reduction in output, removing potential trades that would benefit both buyers and sellers. In a practical sense, this distortion reveals itself as a loss of efficiency in the economy, which means that raising $100 dollars of revenue, requires consumers and producers to give up more than $100 of value.


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FIGURE 9-2 DEADWEIGHT LOSS OF TAXATION

Price ($)

Output

Supply

Demand

Price plus Tax

Price

Taxation Revenue

Actual Quantity Supplied

Potential Quantity Supplied

Deadweight Loss (cost of raising taxation revenue)

The rate of deadweight loss used in this report is 27.5 cents per $1 of tax revenue raised, based on Productivity Commission (2003), plus 1.25 cents per $1 of tax revenue raised for Australian Taxation Office (ATO) administration (Access Economics, 2004b: Part II, 66). Strictly speaking, some change in costs for the administration of the welfare payment agencies should be included. However, given that the total induced change in welfare payments is such a relatively small estimate (i.e. $20.5 million compared to total FACS payments of $4.0 billion in 2004-05 (FACS, 2004-05) there are unlikely to be significant cost savings in administering less payments.

The total extra tax dollars required to be collected include:

� the calculation for the loss of income tax by PWP, their carers and employers;

� the additional induced social welfare payments required to be paid; and

� the value of Government services provided (eg. health system costs, counselling etc).

Thus for PWP the expected total deadweight loss (DW L) was around $79.2 million in 2005.

TABLE 9-3 SUMMARY OF TRANSFERS, 2005 ($M)

PD Medications Analysis Health System Costs Borne by Government 233.2 Lost Taxes 22.2 Welfare Payments 30.4 Other Costs Borne by Government 2.1 Total Transfers 287.9

Resulting DWL 82.3


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10. BURDEN OF DISEASE

To those experiencing PD, less tangible costs such as loss of quality of life, loss of leisure, physical pain and disability are often as or more important than the health system costs or other financial losses. The term ‘burden of disease’ (BoD) refers to the impact of pain, suffering, disability and premature death resulting from disease and injury.

10.1 VALUING LIFE AND HEALTH

Since Schelling’s (1968) discussion of the economics of life saving, the economic literature has properly focused on willingness to pay (willingness to accept) measures of mortality and morbidity risk. Using evidence of market tradeoffs between risk and money, including numerous labour market and other studies (such as installing smoke detectors, wearing seatbelts or bike helmets etc), economists have developed estimates of the value of a ‘statistical’ life (VSL).

The willingness to pay approach estimates the value of life in terms of the amounts that individuals are prepared to pay to reduce risks to their lives. It uses stated or revealed preferences to ascertain the value people place on reducing risk to life and reflects the value of intangible elements such as quality of life, health and leisure. While it overcomes the theoretical difficulties of the human capital approach, it involves more empirical difficulties in measurement (BTE, 2000: 20-21).

Viscusi and Aldy (2002) summarise the extensive literature in this field, most of which has used econometric analysis to value mortality risk and the ‘hedonic wage’ by estimating compensating differentials for on-the-job risk exposure in labour markets, in other words, determining what dollar amount would be accepted by an individual to induce him/her to increase the possibility of death or morbidity by x%. They find the VSL ranges between US$4 million and US$9 million with a median of US$7 million (in year 2000 US dollars). These results are similar but marginally higher than the VSL derived from US product and housing markets and also marginally higher than non-US studies, although all in the same order of magnitude. They also review a parallel literature on the implicit value of the risk of non-fatal injuries.

A particular life may be regarded as priceless, yet relatively low implicit values may be assigned to life because of the distinction between identified and anonymous (or ‘statistical’) lives. When a ‘value of life’ estimate is derived, it is not any particular person’s life that is valued but that of an unknown or statistical individual (Bureau of Transport and Regional Economics, 2002: 19).

Weaknesses in this approach, as with human capital, are that there can be substantial variation between individuals. Extraneous influences in labour markets such as imperfect information, income/wealth or power asymmetries can cause difficulty in correctly perceiving the risk or in negotiating an acceptably higher wage.

Viscusi and Aldy (2002) include some Australian studies in their meta-analysis, notably Kniesner and Leeth (1991) of the Australian Bureau of Statistics (ABS) with VSL of $4.2 million and Miller (1997) of the National Occupational Health and Safety Commission (NOHSC) with quite a high VSL of $11.3m-19.1 million (Viscusi and Aldy, 2002, Table 4:


83

92-93, both estimates expressed in year 2000 US dollars). In addition to the Australian studies being very few in number, there is also the issue of converting foreign (US) data to Australian dollars using either exchange rates or purchasing power parity and choosing a period.

Access Economics (2003b) presents outcomes of studies from Yale University (Nordhaus, 1999) – where VSL is estimated as $US2.66m; University of Chicago (Murphy and Topel, 1999) – US$5m; Cutler and Richardson (1998) – who model a common range from US$3m to US$7m, noting a literature range of $US0.6m to $US13.5m per fatality prevented (1998 US dollars). These eminent researchers apply discount rates of 0% and 3% (favouring 3%) to the common range to derive an equivalent of $US 75,000 to $US 150,000 for a year of life gained.

10.2 DALYS AND QALYS

In an attempt to overcome some of the issues in relation to placing a dollar value on a human life, in the last decade an alternative approach to valuing human life has been derived. The approach is non-financial, where pain, suffering and premature mortality are measured in terms of Disability Adjusted Life Years (DALYs), with 0 representing a year of perfect health and 1 representing death (the converse of a QALY or “quality-adjusted life year” where 1 represents perfect health). This approach was developed by the World Health Organization, the World Bank and Harvard University and provides a comprehensive assessment of mortality and disability from diseases, injuries and risk factors in 1990, projected to 2020 (Murray and Lopez, 1996). Methods and data sources are detailed further in Murray (2001).

The DALY approach has been adopted and applied in Australia by the Australian Institute for Health and Welfare (AIHW) with a separate comprehensive application in Victoria. Mathers et al (1999) included separate identification of the premature mortality (Years of Life Lost - YLL) and morbidity (Years of Life Lost due to Disability - YLD) components:

DALYs = YLLs + YLDs

In any year, the disability weight of a disease (for example, 0.18 for a broken wrist) reflects a relative health state. In this example, 0.18 would represent losing 18% of a year of healthy life because of the inflicted injury.


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FIGURE 10-1 GRAPHICAL REPRESENTATION OF DALYS AND QALYS

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95 100

Age

Hea

lth

Perfect Health

Death

YLLsYLDsQALYs

The DALY approach has been successful in avoiding the subjectivity of individual valuation and is capable of overcoming the problem of comparability between individuals and between nations, although nations have subsequently adopted variations in weighting systems. For example, in some countries DALYs are age-weighted for older people although in Australia the minority approach is adopted – valuing a DALY equally for people of all ages.

A key issue with the DALY approach is that it is not financial and is thus not directly comparable with most other cost measures. In public policy making, therefore, there is always the temptation to reapply a financial measure conversion to ascertain the cost of an injury or fatality or the value of a preventive health intervention. Such financial conversions tend to utilise “willingness to pay” or risk-based labour market studies described above.

The Department of Health and Ageing (based on work by Applied Economics) adopted a very conservative approach to this issue, placing the value of a human life year at around A$60,000 per annum, which is lower than most international lower bounds on the estimate.

“In order to convert DALYs into economic benefits, a dollar value per DALY is required. In this study, we follow the standard approach in the economics literature and derive the value of a healthy year from the value of life. For example, if the estimated value of life is A$2 million, the average loss of healthy life is 40 years, and the discount rate is 5 per cent per annum, the value of a healthy year would be $118,000. Tolley, Kenkel and Fabian (1994) review the literature on valuing life and life years and conclude that a range of US$70,000 to US$175,000 per life year is reasonable. In a major study of the value of health of the US population, Cutler and Richardson (1997) adopt an average value of US$100,000 in 1990 dollars for a healthy year.


85

Although there is an extensive international literature on the value of life (Viscusi, 1993), there is little Australian research on this subject. As the Bureau of Transport Economics (BTE) (in BTE, 2000) notes, international research using willingness to pay values usually places the value of life at somewhere between A$1.8 and A$4.3 million. On the other hand, values of life that reflect the present value of output lost (the human capital approach) are usually under $1 million.

The BTE (2000) adopts estimates of $1 million to $1.4 million per fatality, reflecting a 7 per cent and 4 per cent discount rate respectively. The higher figure of $1.4 million is made up of loss of workforce productivity of $540,000, loss of household productivity of $500,000 and loss of quality of life of $319,000. This is an unusual approach that combines human capital and willingness to pay concepts and adds household output to workforce output.

For this study, a value of $1 million and an equivalent value of $60,000 for a healthy year are assumed. In other words, the cost of a DALY is $60,000. This represents a conservative valuation of the estimated willingness to pay values for human life that are used most often in similar studies. ” (DHA, 2003, pp 11-12).”

As the citation concludes, the estimate of $60,000 per DALY is very low. The Viscusi (1993) meta-analysis referred to reviewed 24 studies with values of a human life ranging between $US 0.5 million and $US 16m, all in pre-1993 US dollars. Even the lowest of these converted to 2003 Australian dollars at current exchange rates, exceeds the estimate adopted ($1m) by nearly 25%. The BTE study tends to disregard the literature at the higher end and also adopts a range (A$1-$1.4m) below the lower bound of the international range that it identifies (A$1.8-$4.3m).

The rationale for adopting these very low estimates is not provided explicitly. Certainly it is in the interests of fiscal restraint to present as low an estimate as possible.

In contrast to the Department’s approach, the majority of the literature as detailed above appears to support a higher estimate for VSL, as presented in Table 2 11. The US dollar values of the lower bound, midrange and upper bound are shown at left. The ‘average’ estimate is the average of the range excluding the high NOHSC outlier. Equal weightings are used for each study as the:

� Viscusi and Aldy meta-analysis summarises 60 recent studies; � ABS study is Australian; and � Yale and Harvard studies are based on the conclusions of eminent researchers in the

field after conducting literature analysis.

Where there is no low or high US dollar estimate for a study, the midrange estimate is used to calculate the average. The midrange estimates are converted to Australian dollars at purchasing power parity (as this is less volatile than exchange rates) of USD=0.7281AUD for 2003 as estimated by the OECD.

Access Economics concludes the VSL range in Australia lies between $3.7m and $9.6m, with a mid-range estimate of $6.5m. These estimates have conservatively not been inflated to 2005 prices, given the uncertainty levels.


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TABLE 10-1 INTERNATIONAL ESTIMATES OF VSL, VARIOUS YEARS

US$m A$m

Lower Midrange Upper 0.7281 Viscusi and Aldy meta-analysis 2002

4 7 9 9.6

Australian: ABS 1991 4.2 5.8 NOHSC 1997 11.3 19.1 Yale (Nordhaus) 1999 2.66 3.7 Harvard (Cutler and Richardson) 1998

0.6 5 13.7 6.9

Average* 2.9 4.7 7.4 6.5

* Average of range excluding high NOHSC outlier, using midrange if no data; conservatively not inflated.

A$m conversions are at the OECD 2003 PPP rate.

Discounting the VSL of $3.7m from Table 10-1 by the discount rate of 3.3% (see Section 4.4) over an average 40 years expected life span (the average from the meta-analysis of wage-risk studies) provides an estimate of the value of a life year of $162,561.

10.3 ESTIMATING THE BURDEN OF DISEASE FROM PD

Burden of Disease is estimated by applying the lower bound value of a statistical life year of $162,561 (based on the conservative value of a statistical life of $3.7 million) to the total Disability Adjusted Life Years (DALYs) due to PD.

� YLDs are based on the weights used in the Begg et al (2007) multiplied by the number of PWP as estimated in Section 3.1 (with a discount rate of 3.3% and no age weighting)50.

� YLLs are based on the number of deaths from PD as estimated in Section 3.4 by the corresponding YLLs for the age of death in the Standard Life Expectancy Table (West Level 26) (with a discount rate of 3.3% and no age weighting).

� YLDs and YLLs are added together to estimate total DALYs.

Significant proportions of older PWP will also have some common conditions associated with older ages (such as hearing loss, arthritis, heart conditions, diabetes etc). It is not possible to add the disability weights for each of these conditions as the total weights may add to greater than 1 – rather a multiplicative model is best used. However the following estimates of DALYs have not been adjusted for comorbidities because:

A) As the disability weights for PD are very high, adjusting the weights for comorbidities will have a very minor impact on DALYs due to PD (a large proportion of the impact will fall on the minor condition); and

B) It is a conservative estimate of DALYs experienced by PD (though not necessarily entirely due to PD) and PWP actually experience higher DALYs than that estimated due to comorbidities.

50 Note that this is a prevalence methodology for estimating YLDs, rather than an incidence methodology as used in Begg et al (2007).


87

Furthermore, the source studies from which the VSL is drawn implicitly include the individual’s net estimation of other personal costs – notably lost earnings (after tax) and out-of-pocket expenses. Thus the net cost of suffering and premature death from PD should exclude these costs to avoid double counting.

10.4 SUMMARY OF BURDEN OF DISEASE

The disability weights for PD range from 0.48 for Stages I to III, 0.79 for Stage IV, and 0.92 for Stage V.

Overall PWP experienced :

� between 29,900 YLDs, or around 0.5 YLDs per PWP ;

� between 9,200 YLLs, or around 6.7 YLLs per death ; and

� between 39,100 DALYs, or around 0.7 DALYs per PWP .

While 75 to 80 year olds bear the most burden of all the age groups, DALYs per PWP consistently increase with age.

Similarly, while people in the initial stages of PD bear the most burden, DALYs per PWP consistently increases with disease stage.

FIGURE 10-2 TOTAL DALYS (YEARS), BY AGE

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

16,000

18,000

20,000

0-4 5–14 15–24 25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

DA

LYs

YLLsYLDs


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FIGURE 10-3 DALYS PER PWP (YEARS), BY AGE

0.0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1.0

0-4 5–14 15–24 25–34 35–44 45–54 55–64 65–74 75-84 85+

Age

DA

LYs

per

PW

P

YLLsYLDs

FIGURE 10-4 DISTRIBUTION OF DALYS, BY DISEASE STAGE

Stage II24%

Stage III21%

Stage IV18%

Stage V9% Stage I

28%


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FIGURE 10-5 DALYS PER PWP, BY DISEASE STAGE

0.6 0.6 0.7

1.0

1.1

0.0

0.2

0.4

0.6

0.8

1.0

1.2

I II III IV V

Disease Stage

DA

LYs

per

PW

P

Note: DALYs per PWP is greater than 1 in Stages IV and V because future YLLs due to PD are attributed to the year that the person dies.


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11. THE ECONOMIC COST OF PD IN AUSTRALIA

In 2005 in Australia it is estimated that there were:

� 54,700 people living with PD ;

� 8,900 new cases of PD ; and

� between 954 and 1,376 deaths due to PD .

Due to the ageing population, by 2025 it is estimated that there will be around 98,460 people living with PD. This is equivalent to a growth rate of 4% per annum, compared to an average population growth rate of 3.6% per annum.

The total financial cost of PD per annum was around $527.7 million in 2005.

These are the real economic costs. In addition there was around $30.4 million of transfer payments – loss of tax revenue and welfare payments.

The main cost components of PD were health system costs ($343.9 million), followed by deadweight loss ($82.8 million), productivity and carer costs ($60.5 million) and other financial costs ($40.5 million).

FIGURE 11-1 FINANCIAL COSTS OF PD, BY TYPE OF COST

Health System Costs65.2%

Productivity Costs10.5%

Carer Costs1.0%

Other Financial Costs7.7%

Deadweight Loss15.7%

The financial costs of PD are mainly borne by the Federal Government (40.5%), followed by society and other parties (such as private health insurance and charities) (23.8%), the household (between 20.0%), State Governments (14.1%) and employers (between 1.6%).


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FIGURE 11-2 FINANCIAL COSTS OF PD, BY WHO BEARS THE COST

Household20.0%

Society/ Other23.8%

Employers1.6%

Federal Government40.5%

State Government14.1%

In addition to financial costs, the burden of disea se– the suffering and premature death experienced by people with PD – is estimated to cost an additional 39,100 DALYs (years of healthy life lost), with 76% due to disability and the remaining 23% due to premature death. The net value of the burde n of disease was $6.3 billion in 2005.

Thus the total economic cost of PD was $6.8 billion in 2005.

TABLE 11-1 THE TOTAL COST OF PD ($M) Individuals Family/Friends Federal Government State Go vernment Employers Society/ Other Total

Burden of Disease 6,262.7 0.0 0.0 0.0 0.0 0.0 6,262.7Health System Costs 67.7 0.0 158.9 74.3 0.0 43.0 343.9Productivity Costs 26.6 0.0 20.3 0.0 8.3 0.0 55.2Carer Costs 0.0 3.4 2.0 0.0 0.0 0.0 5.4Other Financial Costs 37.8 0.6 2.1 0.0 40.5Deadweight Loss 0.0 0.0 0.0 0.0 0.0 82.8 82.8Transfers -17.5 -12.9 30.4 0.0 0.0 0.0 0.0Total 6,377.4 -8.9 213.6 74.3 8.3 125.8 6,790.4


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The economic cost of PD per PWP was around $124,000 , of which the BoD component was around $114,400 per PWP while the fin ancial cost was around $9,600 per PWP.

While the BoD generally increases with age, the financial costs of PD is highest for people aged 50-65 largely due to the lost earnings due to premature mortality and workforce separation, however this effect disappears from 65 onwards. Both the BoD and financial costs increase with disease stage.

Based on the average prognosis for a PWP (see Section 2.4), if a PWP lived for 12 years with PD and progressed through the various disease stages until death then the lifetime financial cost of PD would be around $100,000 in 20 05 dollars.

FIGURE 11-3 NET VALUE OF BURDEN OF DISEASE PER PWP ($), BY AGE

0

20,000

40,000

60,000

80,000

100,000

120,000

140,000

160,000

25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

Age

Net

Val

ue o

f the

Bur

den

of D

isea

se


93

FIGURE 11-4 FINANCIAL COSTS PER PWP ($), BY AGE

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

16,000

25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

Age

Tot

al F

inan

cial

Cos

t

FIGURE 11-5 NET VALUE OF THE BURDEN OF DISEASE PER PWP ($), BY DISEASE STAGE

97,500105,200 106,800

158,000

179,700

0

20,000

40,000

60,000

80,000

100,000

120,000

140,000

160,000

180,000

200,000

I II III IV V

Disease Stage

Net

Val

ue o

f the

Bur

den

of D

isea

se


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FIGURE 11-6 FINANCIAL COSTS PER PWP ($), BY DISEASE STAGE

5,700 6,100

12,900

17,400 17,200

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

16,000

18,000

20,000

I II III IV V

H&Y Stage

Tot

al F

inan

cial

Cos

t


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12. SENSITIVITY ANALYSIS

12.1 LOWER BOUND ESTIMATE OF PREVALENCE

12.1.1 PREVALENCE AND INCIDENCE

Idiopathic PD

It is preferable to use Australian studies to estimate the prevalence of idiopathic PD due to differing risk factors across countries. However, except for Chan (2001) and Chan (2005) (which appear to be outliers), no community-based studies using a two-phase investigation method have been undertaken in Australia.

Consequently the prevalence estimates of PD used in Begg et al (2007) are based on de Rijk (2000), which estimated the prevalence of PD in Europe using pooled data from seven similar, community-focused studies, and then supplemented by estimates of prevalence of PD in people aged younger than 65 years from de Rijk (1995). However due to the lack of studies on younger people with PD, this methodology continues to underestimate the number of young people with PD and consequently overestimate the average age of onset.

Secondary PD

For the purposes of Begg et al (2007), Parkinson’s disease has been narrowly defined as idiopathic (or primary) PD where the cause is unknown. The estimates of prevalence and burden do not extend to secondary PD (which may have been induced by drugs, environmental toxins, trauma, metabolic derangement, stroke and brain tumour) or Parkinson’s-like conditions such as progressive supranuclear palsy and multiple system atrophy.

While secondary PD is not often listed as a cause of death on death certificates (secondary PD is probably often listed as simply PD, and then coded to idiopathic PD), it is thought 8.2% of PWP have secondary PD (Stacy and Jankovic, 1995). Although diagnosis, medical treatment and prognosis can be very different, both idiopathic and secondary PD have similar impacts on the individual. Consequently both groups should be included in the one group and an adjustment to the prevalence rates should be made to ensure that these people are included.

Consequently the Begg et al (2007) estimates are scaled up by 8.2% to include secondary PD.

Summary of BoD Study Estimates

Table 12-1 outlines the final estimates of prevalence of PD in Australia in 2005 using the Begg et al (2007) estimates. As the estimates are based on a two-phase investigation method which ensures that under-diagnosis and misdiagnosis is kept to a minimum, no additional adjustment will be made for under-diagnosis and misdiagnosis.

� Prevalence: It is estimate that there were around 53,200 PWP in 2005.

�� 49,100 PWP had idiopathic PD and 4,000 had secondary PD.

�� 25,700 were male and 27,500 were female.


96

� New Cases: It is estimated that there were around 8,200 new cases of PD in 2005.

�� 7,600 new cases had idiopathic PD and 600 had secondary PD.


Using the same methodology as in Section 0.

� Prevalence by disease stage: In 2005 there were:

�� 42,300 PWP in the initial stages of PD (Stages I to III),

�� 7,400 PWP in the intermediate stage of PD (Stage IV), and

�� 3,400 PWP in the end stage of PD (Stage V).

� Projections: There are estimated to be 53,200 PWP in 2005, increasing to 61,000 people (up 15%) by 2010 and to 98,300 people (up 85% from today) by 2025.

�� Equivalent to an annual growth rate of 4.2% per annum between 2005 and 2025.

�� 52% of PWP are female, which is projected to decline slightly to 49% in 2025.

�� 10% of PWP are of working age (15-64 years), which is projected to decline slightly to 8% in 2025.

TABLE 12-1 BOD STUDY ESTIMATES, 2005

Prevalence Rates (%) Cases

Age Males Females Total Males Females Total 0-4 0.00% 0.00% 0.00% 0 0 0 5–14 0.00% 0.00% 0.00% 0 0 0 15–24 0.00% 0.00% 0.00% 0 0 0 25–34 0.00% 0.00% 0.00% 0 0 0 35–44 0.00% 0.00% 0.00% 0 0 0 45–54 0.04% 0.01% 0.03% 600 100 700 55–64 0.27% 0.15% 0.21% 3,000 1,600 4,600 65–74 0.95% 0.92% 0.93% 6,400 6,600 13,000 75-84 2.83% 2.37% 2.57% 11,700 12,800 24,500 85+ 3.87% 3.00% 3.28% 3,900 6,400 10,300


TABLE 12-2 BOD STUDY ESTIMATES, 2005

Incidence Rates (%) New Cases

Age Males Females Total Males Females Total 0-4 0.00 0.00 0.00 0 0 0 5–14 0.00 0.00 0.00 0 0 0 15–24 0.00 0.00 0.00 0 0 0 25–34 0.00 0.00 0.00 0 0 0 35–44 0.00 0.00 0.00 0 0 0 45–54 0.01 0.00 0.01 200 0 200 55–64 0.04 0.03 0.04 500 400 800 65–74 0.18 0.14 0.16 1,200 1,000 2,200 75-84 0.56 0.20 0.36 2,300 1,100 3,400 85+ 0.98 0.24 0.48 1,000 500 1,500



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12.1.2 ECONOMIC COSTS

The following estimates of the economic costs of PD are based on the same methodology as contained in Section 4 through to Section 10, however using the estimated prevalence from Begg et al (2007).

� Health System Costs : The total health system cost of PD was $343.8 million.

�� $289.1 million were directly due to PD, while $54.7 million were additional health system costs due to comorbidities.

�� The average cost per PWP was $6,500, of which 20% were borne by individuals.

� Productivity Costs: The total productivity cost of PD was $30.6 million.

�� The largest component was premature workforce separation ($16.0 million), followed by temporary absenteeism from work ($7.8 million), premature mortality ($6.8 million), and search, hiring and training costs ($0.02 million).

�� The average cost per PWP was $600, of which workers bore 49%, the government bore 37%, and employers bore 14%.

� Informal Care Costs: The total informal care cost of PD was $2.2 million.

�� There were 7,300 carers of PWP, of which 560 were of working age.

�� The average cost per PWP was $40, of which the household bore 63% and the government the remaining 37%.

� Other Financial Costs: The total other financial cost of PD was $40.1 million.

�� The largest component was aids and modifications ($35.9 million).

�� The average cost per PWP was $750, of which individuals bore 93%.

� Transfers: The total deadweight loss associated with transfers due to PD was $77.1 million.

�� The additional DSP payments paid to PWP was $9.3 million and carers of PWP received $11.8 million.

�� The total lost taxes was $12.0 million.

The total financial cost of PD was $493.7 million ( 6% lower than the base case methodology) and the average financial $9,300 per PWP (4% lower than the base case methodology).

� Burden of Disease: The net value of the burden of disease due to PD was $6.2 billion.

�� Using a prevalence methodology: PWP experienced 29,300 YLDs and 9,200 YLLs – totalling 38,500 DALYs. This is equivalent to 0.55 YLDs per PWP, 0.17 YLLs per PWP (or 6.68 YLLs per death), and 0.72 DALYs per PWP.

�� In comparison, using an incidence methodology: PWP experienced 21,157 YLDs (excludes secondary PD; Begg et al, 2007). This is equivalent to 2.96 YLDs per new case.


98



The total economic cost of PD was $6.7 billion (2% lower than the base case methodology) and the average economic cost was $125,500 per PWP (1% higher than the base case methodology).

12.2 UPPER BOUND ESTIMATE OF PREVALENCE

The upper bound estimate of prevalence is based on the number of people receiving PD medications explicitly for PD (see Section 3.1) increased by 32% to take into account the average rate of under-diagnosis of PD found by de Rijk (1997) (see Table 3-3).

Underlying this methodology is the assumption that under-diagnosed PWP use the same level of economic resources and have the same level of burden of disease as diagnosed PWP.

On the one hand, under-diagnosed PWP may be in the earlier stages of PD or have another severe disease51 that conceals the true extent of the symptoms (such as severe dementia). These people would have a lower burden of disease than the average. On the other hand, under-diagnosed PWP may experience a higher burden of disease than the average due to a lack of treatment with PD-specific medications.

Furthermore, an under-diagnosed person may use less PD-specific medications (such as levodopa) but as a result may use of other health system resources more intensively to treat symptoms (such as more GP or hospital visits).

Currently the direction and the degree of variation in average costs of under-diagnosed PWP relative to diagnosed PWP are unknown.

Summary of Prevalence and Economic Costs

� Prevalence: It is estimated that there were around 72,200 PWP in 2005.


�� 58,500 were in the initial stages of the disease, 9,400 were in the intermediate stage, and 4,300 were in the final stage.

� Health System Costs : The total health system cost of PD was $436.3 million.

�� $381.2 million were directly due to PD, while $55.1 million were additional health system costs due to comorbidities.

�� The average cost per PWP was $6,000, of which 20% were borne by individuals.

� Productivity Costs: The total productivity cost of PD was $70.7 million.

51 Particularly relevant for older people.


99

�� The largest component was premature workforce separation ($43.7 million), followed by temporary absenteeism from work ($20.1 million), premature mortality ($6.8 million), and search, hiring and training costs ($0.02 million).

�� The average cost per PWP was $1,000, of which workers bore 48%, the government bore 37%, and employers bore 15%.

� Informal Care Costs: The total informal care cost of PD was $7.1 million.

�� There were 9,600 carers of PWP, of which 1,600 were of working age.

�� The average cost per PWP was $100, of which the household bore 63% and the government the remaining 37%.

� Other Financial Costs: The total other financial cost of PD was $53.2 million.

�� The largest component was aids and modifications ($48.1 million).

�� The average cost per PWP was $740, of which individuals bore 94%.

� Transfers: The total deadweight loss associated with transfers due to PD was $105.6 million.

�� The additional DSP payments paid to PWP was $23.0 million and carers of PWP received $17.1 million.

�� The total lost taxes was $28.5 million.

The total financial cost of PD was $672.8 million ( 27% higher than the base case methodology) and the average financial $9,300 per PWP (3% lower than the base case methodology).

� Burden of Disease: The net value of the burden of disease due to PD was $7.8 billion.

�� PWP experienced 39,500 YLDs and 9,200 YLLs – totalling 48,700 DALYS.



The total economic cost of PD was $8.5 billion (25% higher than the base case methodology) and the average economic cost was $117,200 per PWP (6% lower than the base case methodology).

12.3 OTHER SENSITIVE PARAMETERS

While conservative assumptions have been used, almost every parameter is surrounded by some margin of error. Performing a sensitivity analysis on every parameter would involve expending considerable effort for very little benefit (varying many of the parameters would have a negligible impact on the total cost). Consequently the sensitivity analysis focuses on a range of variables considered to be significant in this study.

The choice of parameters reflects either their potential impact on an important individual cost category (for example parameters specific to pain and suffering costs and productivity costs), or their pervasive impact on a number of cost categories (for example the discount rate).


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Value of a Statistical Life

It was found that using the ‘average’ VSL ($6.5m) rather than the conservative lower bound ($3.7m) provides an upper bound of economic cost of PD of $11.6 billion (71% higher than the base case). This large impact on the total cost is unsurprising considering this cost category makes up 92% of the total economic costs and any change in the variable would therefore have a significant impact on the overall cost, especially since the error margins around the variable is quite large.

Replacement Value of Informal Care

The estimate of the replacement value of informal community care is sensitive to changes in the estimate of the wage parameter for alternate formal sector care. In this analysis, the unit cost used has been based on the wage of moderately skilled formal sector carers (supervised employees). In May 2004, full-time carers and aides employed in the formal sector received an average wage of $17.20 per hour, or $650.30 for a 37.8 hour week (ABS 6202.0). This average includes payment of overtime for after hours work. However, the hourly rate received by employees does not account for on-costs such as superannuation incurred by employers, the wages of supervisors, managers or administrative support staff or other capital overheads. Loadings are added for each of these additional costs, and for average wage growth between May 2004 (when the survey was last undertaken) and February 2005 (the most recent period for which estimates of average weekly earnings across all employees are available).

TABLE 12-5: REPLACEMENT VALUATION OF INFORMAL CARE , UNIT COST COMPONENTS

% Loading Hourly rate Base rate per hour – May 2004 $17.20

Loading for growth in AWE May 2004 to Feb 2005 4.9% $0.85

Loading for on-costs 15.6% $2.82

Loading for capital 3.6% $0.75

Loading for supervision and administration 16.3% $3.40

Total hourly rate inc. overheads $25.01

The 15.6% loading of on-costs comprises superannuation, workers compensation, payroll and Fringe Benefits Taxation allowances (ABS 6348.0.55.001). Loadings for capital (3.6%) and administrative (16.3%) overheads are based on the relative shares of capital expenditure and administration costs to other areas of recurrent spending in Australia’s formal health sector (AIHW, 2004a, and AIHW, 2005a). When all these loadings are added, the hourly cost of employing a carer in the formal sector to replace an informal carer is $25.01 in 2005 (Table 12-5).

It was found that using the replacement valuation for informal care increases financial costs by $344.0 million (65.2% higher than the base case), consequently increasing carer costs from 1.0% to 36.3% of the financial costs of PD (see Figure 12-1).


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FIGURE 12-1 FINANCIAL COSTS BY TYPE, REPLACEMENT VALUE OF INFORMAL CARE

Health System Costs39.5%

Productivity Costs6.3%

Carer Costs36.3%

Other Financial Costs4.7%

Deadweight Loss13.3%

This large impact on the financial costs is unsurprising since carers provide so many hours of care to PWP; however because many of them are older they also have a lower probability of working which forces down the opportunity cost of their time. However if they were unable to care many PWP would require care from other sources such as EACH or residential aged care.

Average Weekly Earnings and the Bond Rate

In comparison, the two other parameters considered have a much lower impact on the overall total cost of PD. Two reasons for the lower impact are: the costs on which these variables impact are not as large as those of pain and suffering; and the error margins around these variables are not considered to be as large.

Another reason for the lower impact is that in some cases changing the variables have offsetting effects on each of the cost categories. For example, decreasing the AWE decreases production costs (for example, a less productive worker being absent from work costs the economy less than a more productive worker being absent) and the deadweight loss (less taxes are being lost) but increases the costs of pain and suffering (as the average VSL of every person’s life is valued at the same rate regardless of their productive capacity — consequently netting out a lower loss in wages increases the net cost of pain and suffering).

12.4 SUMMARY OF SENSITIVITY ANALYSIS

Overall the financial costs of PD range from $489.7 million to $866.7 million, while the total costs of PD (including the value of the burden of disease) range from $6.7 billion to $11.6 billion. Our base case estimate of the costs of PD lies at the conservative side of the spectrum.


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TABLE 12-6 SENSITIVITY ANALYSIS

Impact on Value of BoD

Impact on Financial Cost

Impact on Total Economic Cost

Variable $m % $m % $m % Upper Prevalence 1530.7 24.4% 145.1 27.5% 1675.7 24.7% Lower Prevalence -83.2 -1.3% -34.0 -6.4% -117.2 -1.7% VSL middle bound (76% increase)

4810.7 76.8% 0.0 0.0% 4810.7 70.8%

10% increase in the bond rate52

513.8 8.2% 0.0 0.0% 513.8 7.6%

10% decrease in AWE 2.7 0.0% -6.6 -1.2% -3.9 -0.1% Replacement valuation of informal care

0.0 0.0% 344.0 65.2% 344.0 5.1%

FIGURE 12-2 SENSITIVITY ANALYSIS AROUND FINANCIAL COSTS

$0

$100

$200

$300

$400

$500

$600

$700

$800

$900

$1,000

Lower Prevalence 10% decrease in AWE 10% increase in thebond rate

VSL middle bound Base Case Upper Prevalence Replacement Valuation

Mill

ions

52 If the long-term nominal bond rate was discount rate was 10% higher (6.38%) then: the discount rate for income streams of future earnings becomes 2.13%; the discount rate for health costs becomes 3.18%; the discount rate for other future streams (healthy life) becomes 3.88%, which makes the lower bound VSLY increase to $176,754.


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FIGURE 12-3 SENSITIVITY ANALYSIS AROUND TOTAL COSTS

$0

$2

$4

$6

$8

$10

$12

$14

Lower Prevalence 10% decrease in AWE Base Case Replacement Valuation 10% increase in thebond rate

Upper Prevalence VSL middle bound

Bill

ions


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13. COMPARISONS

13.1 PREVALENCE OF PD AND DEATHS DUE TO PD

PD is a surprisingly prevalent condition – with higher prevalence than a number of diseases and injuries considered National Health Priority Areas (NHPAs) (see Figure 13-1), such as:

� Cancers such as prostate cancer, lymphoma and leukaemia, kidney and bladder cancer, and uterine, cervical, and ovarian cancer.

� Injuries such as homicide and violence, suicide and self-inflicted injuries, fires, burns and scalds, and machinery accidents.

For people aged over 55 years, the prevalence of PD is also higher than breast cancer, colorectal, stomach, liver and pancreatic cancer, and infectious diseases (see Figure 13-2).

The new estimates presented in this report (which are still conservative) are larger than the previous AIHW estimates – between 53,200 and 72,200, compared to 36,430 (Mathers et al, 1999).

Similarly the number of deaths due to PD is similar to deaths due to uterine, cervical, and ovarian cancer combined together, and higher than accidental falls (both NHPAs) (see Figure 13-3).

Compared to other neurological conditions , PD has the second highest prevalence and number of deaths (exceeded only by dementia) (see Figure 13-4 and Figure 13-5). However Mathers et al, (1999) largely ignores many of the other PD-like diseases such as progressive supranuclear palsy and multiple system atrophy. While rarer, many of these diseases would have a similar financial impact and disease burden compared to PD.


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FIGURE 13-1 PREVALENCE OF DISEASES AND INJURIES, 2004-05

15.0

16.3

22.0

23.0

52.8

59.8

63.5

111.0

129.0

170.4

197.9

326.6

398.9

642.2

699.6

753.8

1,244.8

1,366.7

1,581.4

2,013.5

2,108.3

2,486.3

3,536.6

6,092.2

10,205.8

54.7

53.4

- 2,000 4,000 6,000 8,000 10,000 12,000

Cancer* - Uterine, Cervical, and Ovarian

Cancer* - Lung

Cancer* - Kidney and Bladder

Cancer* - Lymphoma and Leukaemia

Injuries* - Homocide and Violence

Cancer* - Prostate

Parkinson's

Cancer* - Colorectal, Stomach, Liver and Pancreatic

Cancer* - Breast

Cancer* - Other

Injuries* - Transport Accidents

Infectious & parasitic diseases

Congenital malformations etc

Blood & blood forming organs

Injuries* - Falls

Genito-urinary system

Diabetes Melitus*

Skin & subcutaneous tissue

Injuries* - Other

Digestive system

Nervous system

Asthma*

Mental and behavioural problems*

Hearing loss

Cardiovascular*

Arthritis and Musculoskeletal*

Visual disorders

Number of persons ('000) reporting condition* National Health Priorities

Sources: ABS (2004-05) 4364.0, Access Economics (2007), and incidence of injuries from Mathers et al (1999) indexed to population growth.


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FIGURE 13-2 PREVALENCE OF DISEASES AND INJURIES (+55 YEARS), 2004-05

8.8

14.2

14.8

17.8

38.6

50.5

50.8

65.2

100.4

202.5

312.8

343.7

415.2

493.2

504.7

673.0

1,361.8

2,186.5

2,867.4

4,387.4

51.1

50.2

40.2

- 1,000 2,000 3,000 4,000 5,000

Cancer* - Uterine, Cervical, andOvarian

Cancer* - Lung

Cancer* - Lymphoma andLeukaemia


Cancer* - Breast


Cancer* - Prostate

Cancer* - Colorectal, Stomach,Liver and Pancreatic


Parkinson's

Cancer* - Other



Nervous system


Asthma*

Mental and behaviouralproblems*

Diabetes Melitus*

Digestive system

Hearing loss

Cardiovascular*


Visual disorders

Number of persons ('000) reporting condition* National Health Priorities

Sources: ABS (2004-05) 4364.0, and Access Economics (2007).


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FIGURE 13-3 CAUSES OF DEATH, 2004

0

0

313

337

485

581

873

1,039

1,329

1,496

1,689

1,807

1,818

2,661

2,789

2,976

3,414

3,599

3,643

3,820

4,553

5,404

7,559

8,276

10,434

11,020

12,041

24,576

0 5,000 10,000 15,000 20,000 25,000

Hearing loss

Visual disorders

Asthma*




Injuries* - Falls

Musculoskeletal*

Parkinson's

Cancer* - Uterine, Cervical, and Ovarian

Injuries* - Transport Accidents



Cancer* - Breast

Cancer* - Prostate



Diabetes melitus*

Nervous system

Cancer* - Lymphoma and Leukaemia

Digestive system

Injuries* - Other

Cancer* - Lung

Cancer* - Other

Cancer* - Colorectal, Stomach, Liver and Pancreatic

Cardiovascular* - Other

Cardiovascular* - Stroke

Cardiovascular* - IHD

Number of Deaths* National Health Priorities

Source: ABS 3303.0


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FIGURE 13-4 PREVALENCE OF NEUROLOGICAL CONDITIONS, 2005

39

124

381

5,434

19,059

53,162

72,235

174,078

54,723

0 20,000 40,000 60,000 80,000 100,000 120,000 140,000 160,000 180,000 200,000

Muscular Dystrophy

Huntington's

Motor-Neuron Disease

Epilepsy

Multiple Sclerosis

Parkinson's (Lower)

Parkinson's (Base)

Parkinson's (Upper)

Dementia

Prevalence

Sources: Mathers et al (1999) indexed to age-sex specific population growth53.

FIGURE 13-5 DEATHS DUE TO NEUROLOGICAL CONDITIONS, 2005

49

51

125

300

431

5,301

1,376

0 1,000 2,000 3,000 4,000 5,000 6,000

Muscular Dystrophy

Huntington's

Multiple Sclerosis

Epilepsy

Motor-Neuron Disease

Parkinson's (Base)

Dementia

Number of deaths

Sources: Mathers et al (1999) indexed to age-sex specific population growth.

53 Mathers et al (1999) was used for consistency in prevalence estimates across diseases, however these may differ from more recent estimates in the literature.


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13.2 HEALTH SYSTEM AND FINANCIAL COSTS

Health expenditure on PD per PWP per year is similar to multiple sclerosis and relatively higher than many other diseases and injuries, namely due to the higher use of residential aged care. However expenditure per person is relatively lower than dementia and cancer.

FIGURE 13-6 HEALTH SYSTEM COSTS PER PERSON, 2005

0 2,000 4,000 6,000 8,000 10,000 12,000 14,000 16,000 18,000 20,000

Asthma*


Congenital anomalies

Diabetes mellitus*

Other Nervous System Disorders

Cardiovascular*

Mental disorders*

Skin diseases

Digestive system

Injuries*

Genito-urinary

Parkinson's

MS

Infectious & parasitic

Cancer*

Dementia

Health Costs per Person ($)* National Health Priorities

Sources: AIHW (2000-01) indexed to health inflation and population growth, ABS (2004-05) 4364.0, Access Economics (2007), and incidence of injuries from Mathers et al (1999) indexed to population growth, Access Economics (2005b), Access Economics (2003)

In comparison, the other financial costs54 of PD per PWP (i.e. excluding health costs) ($9,600) are lower than dementia ($24,400) and multiple sclerosis ($14,300) – the former due to a higher use of residential aged care, the latter due to higher productivity impacts.

However the financial costs of PD are incurred over many years. The lifetime financial cost of a PWP living with PD for 12 years (around $ 100,000) is on par with the average lifetime financial cost of cancer ($114,500). While lower than many childhood cancers, it is significantly higher than prostate and breast cancer (both around $64,000) (Access Economics, 2007).

13.3 BURDEN OF DISEASE

PWP experience extremely high levels of disease bur den. Living with PD in the initial stages is considered more burdensome than blindness and deafness, living with PD in the intermediate stages is more burdensome than primary progressive multiple sclerosis and on-par with severe depression, and living with PD in the final stages is more burdensome than living with irradically removed or disseminated colorectal cancer, and on par with terminal stage cancer or severe dementia.

54 Based on the replacement valuation approach to ensure comparing similar methodologies of estimating financial costs.


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FIGURE 13-7 DISABILITY WEIGHTS

0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0

Influenza

Chronic Back Pain

Asthma* - sev.

Hearing Loss - sev.

Rheumatoid Arthritis* - moderate

Visual Impairment - sev.

PD - Stage I to III

Cystic fibrosis

Dementia - mod.

Stroke - mod. impairment

Multiple Sclerosis - primary progressive

Depression* - sev.

PD - Stage IV

Colorectal Cancer* - Irradically removed/disseminated

PD - Stage V

Cancer* - terminal phase

Dementia - severe

Disease Weight* National Health Priorities

Source: Mathers et al (1999)

Consequently PWP experience more DALYs per person over their lif etime compared to many other diseases and injuries , especially as:

� PWP living with the disease for a relatively long time, compared to diseases such as cancer, and

� PWP being generally younger than people with dementia.

FIGURE 13-8 DALYS PER PERSON

0.0 1.0 2.0 3.0 4.0 5.0 6.0 7.0 8.0 9.0 10.0

Musculoskeletal*



Injuries*

Digestive system



Hearing loss

Visual disorders

Asthma*

Cancer*

Diabetes melitus*

Cardiovascular*


Nervous system (excl. PD)

Parkinson's (Base)


Disability Adjusted Life Years Lost per New Case* National Health Priorities

Source: Begg et al (2007) for PD and Mathers et al (1999) for all other diseases.


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14. POSITIVE STEPS

The analysis in this report underscores the potential to change the disease burden and composition of the costs of PD. Three general principles must be borne in mind, given the cost profile.

� Timely diagnosis and cost-effective health interventions (such as specialist nurses) have the ability to reduce the immediate burden of the disease, help the PWP maintain their independence, and ultimately retard growth in future costs of PD and enhance the quality of life of people with PD over the longer term.

� Interventions that enhance employment retention and opportunities have great capacity to reduce production losses and thus overall costs of PD.

� Support of their informal sector carers is vital to delay costly institutionalisations.

14.1 IMPROVING DIAGNOSIS

Currently there is no definitive test for PD – diagnosis is often based on medical history and the presence of the classic symptoms of PD. Sometimes people are given anti-PD drugs to see if they respond, or other tests may be performed, such as MRI and CT scans, to rule out other disorders with similar symptoms.

Even when symptoms become noticeable, it often takes two years before a definite diagnosis is made (Hely, 2005, and expert opinion). The presence of other diseases, such as dementia and general ageing can obscure PD symptoms and reduce the chance of an accurate diagnosis. Differences in referral habits across doctors and accessibility of medical services in regional areas can also impact the chance of being diagnosed.

A number of European studies have found that there are around 3.2 undiagnosed cases for every ten diagnosed cases (see Table 3-3).

Long lead times between the onset of PD, the appearance of symptoms and diagnosis:

� result in the use of ineffective treatments aimed at the wrong disease and unnecessary diagnostic testing; and

� significantly decreases the window of opportunity for preventive or protective treatments55.

Improving rates of early diagnosis and earlier treatment would result in:

� PWP, governments, and health insurers avoiding unnecessarily high levels of financial costs:

�� For example, pharmacotherapies for PD are generally much less expensive than institutionalised care, PWP would be more likely to leave the workforce sooner, and governments would lose tax revenue and spend more on welfare payments.

� PWP would avoid experiencing unnecessarily high levels of disease burden.

55 The burden of disease would probably still be lower in the early stages compared to a diagnosed person, due to experiencing milder symptoms at that disease stage.


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Furthermore the use of preventative or protective treatments would reduce the growth in financial costs and disease burden over time.

Early diagnosis would also enable the PWP and the family to adjust better to the diagnosis, understand the illness, learn how to cope better through adequate counselling and education and better plan for the future financially and legally.

Positive Steps – Improving Diagnosis

Primary prevention to reduce the onset of PD is limited because causation and risk factors are not sufficiently understood. More research is required in this area. Where possible, those with a family history of the disease should be informed of the risk, symptoms and treatability of the disease, to enable an early diagnosis to be made if required and rapid symptomatic relief to be attained.

Secondary prevention is aimed at the early diagnosis of PD and the use of protective treatments. Funding for the development of a definitive test for PD would prove highly advantageous in terms of decreasing costs the long run. Some steps towards this goal have been made by the Prince of Wales Medical Research Institute in collaboration with other researchers around the world (POWMRI 2007). In the meantime, increasing the content of medical degrees and ongoing training relating to PD , with the aim to increase GP’s:

� ability to identify initial symptoms of PD and distinguish between PD and other differential diagnoses;

� awareness of juvenile and young-onset PD;

� timely referrals to neurologists on initial presentation of symptoms, and for regular review of diagnosis or reconsideration if atypical clinical features develop;

� use of best practice guidelines for PD (for example, the American Academy of Neurology guidelines, or the UK National Institute of Clinical Excellence Guidelines);

� rate of referral to other allied health professionals (such as occupational, physio and speech therapists – see Section 14.2)

� awareness of the variability and unpredictability of symptoms over a short period of time (especially movements from the “on” to “off” phases), and

� awareness of the importance of regularly taking medication.

As is common with many conditions of low prevalence but high medical complexity, GP awareness of PD is a common problem. With 21,919 practicing GPs in Australia in 2003 (AIHW 2005b), each GP is responsible for the care of only two to three patients and consequently do not gain the range or depth of clinical experience required to manage the condition optimally (Hurwitz, 2005). Anecdotally, GPs may receive little more than 2-3 hours regarding PD56. Peters et al (2006) identified a need by 90% of GPs for additional training in the diagnosis and management of PD and other neurological conditions.

In the UK, up to 70% of PWP have no regular contact with consultants with a specialist interest in PD, and rely entirely on GPs for the medical care of their condition (Hurwitz, 2005: 98). A similar situation is likely to hold for Australia given the greater distances required to visit a specialist. Consequently increasing GP awareness of PD is crucial to achieve the optimal treatment of PWP.

56 Expert opinion.


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14.2 ACCESSING HEALTH SERVICES

This section discusses the benefits to increasing access to various health services, the constraints faced by PWP when attempting to access these services and suggests some positive steps that may relieve some of these constraints.

14.2.1 PARKINSON ’S DISEASE NURSE SPECIALISTS (PDNS) AND ALLIED HEALTH PROFESSIONALS

Increased access to PDNS and allied health professionals can significantly contribute towards better management of treatment and reducing the impact of symptoms. However significant constraints exist in funding these services, encouraging GPs and specialists to refer PWP to allied health professionals, and accessing these services in rural and remote areas.

Parkinson’s Disease Nurse Specialists (PDNS)

The main role of a PDNS is to:

� Coordinate care for the PWP.

� Conduct holistic assessments of the individuals needs, taking into account their lifestyle and preferences.

� Monitoring well-being and response to treatment.

� Make referrals to other health and social care professionals.

� Provide education to other health and social care professionals.

� Provide education and counselling to PWP and their carers.

The potential benefits of PDNS include:

� Through substituting for some of the specialist care, PDNS can reduce follow up consultations with specialists and GPS and free up more time for initial assessment and diagnosis (NICE, 2006);

�� Hobson et al (2003) estimated that the introduction of a PDNS saved the Conwy and Denbighshire (C&D) NHS trust around ₤100,000 of specialist consultant time with outpatient per year.

� Through additional information and referrals provided to PWP, PDNS can improve drug management and reduce the incidence of complications thus: reducing hospital admissions; outpatient attendances; nursing home admissions; and disease burden.

Specialist nurses are already commonly used to manage other conditions in Australia, such as diabetes, however in Australia only eleven PDNS are currently funded across Australia.

In comparison, PDNS care has been operational in the UK for the past 10 years and is supported by the UK Parkinson’s Disease Society. These nurses are generally set up around a specialist (neurologist or GP) in PD (NICE, 2006). A brief literature review identified two studies that examined the cost-effectiveness of PDNS in the UK:

1 A randomised controlled trial of 1,859 PWP in the UK examining the health and cost impacts of GP-based PDNS found (Hurwitz, 2005):

�� No statistical difference in fracture or mortality rates, and no statistical difference in average quality of life scores (measured using EuroQoL or PDQ-39), but


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PDNS patients had significantly better outcomes when asked about a change in general health over the two year period.

�� No statistical difference in overall health system costs (mainly through a lack of difference in health service usage), although PDNS patients were more likely to receive a drug regime that was considered good practice, which may result in greater health and service usage impacts in the long run.

2 A randomised controlled trial of 108 PWP in the UK examining the health and cost impacts of specialist-based PDNS found (Reynolds, 2005):

�� No statistical difference in average quality of life scores (measured using SF-36 and PDQ-39) except for physical functioning and general health, favouring the consultant. However the lack of a control centre and the referral of some patients from the consultant to the PDNS mid-study may be confounding the findings (PDNS and the consultants worked closely together).

�� Higher costs per month for PDNS patients, however the methodology used and the breakdown of the costs were not reported.

Physiotherapy

Physiotherapy or muscle-strengthening exercises are often used to help improve mobility (especially balance, and thus reduce the incidence of falls and fractures), gait problems, flexibility, general fitness, and muscles used in speech and swallowing57.

A Cochrane review of physiotherapy for PWP found 11 randomised controlled trials involving a total of 280 patients. Hours spent in therapy ranged from 8 to 30 hours. 10 of the 11 trials claimed a positive effect of physiotherapy:

� One study found the total UPDRS to be statistically significantly improved with physiotherapy by 22.5 points, and this improvement was maintained for up to 5 months after therapy. Another study found the UPDRS motor subsection (party III) to be improved with physiotherapy by 4 points.

� Four studies increased walking velocity between 0.3-0.48 m/s, two studies found an improvement in stride length, one study found an improvement in flexibility, one study did not find a statistical significant improvement in dexterity, one study found an improvement in functional reach, and one study did not find a significant improvement in an equilibrium score.

� For one study Activities of Daily Living were found to be statistically significantly improved and maintained for five months (by 14 points using the Bartel Index and by 6.8 points using the North-western University Disability scale).

� One study found not statistically significant improvement in quality of life using the generic SF-36 and PDQ-39 questionnaires.

Overall the Cochrane review concluded that, while 10 of the 11 trials reported a positive outcome with physiotherapy , methodological problems and small sample sizes prevented them from drawing any firm conclusions on the effectiveness of physiotherapy (Deane, 2001d). Furthermore there is a wide range of approaches to treat PWP with physiotherapy, thus a need to develop a definition of ‘best practice’.

57 Speech therapy also involves exercises for muscles used in speech and swallowing.


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Speech Therapy

PD can significantly reduce an individual’s ability to communicate with others through the combination of speech disorders (dysarthria) and the reduction in non-visual cues, such as facial expressions and hand gestures. This causes difficulties in using a telephone or talking to strangers, thus increasing social isolation and depression.

Speech therapists can assist in reducing dysarthria through behavioural treatment techniques (drills and exercises) focusing on pitch, volume, respiration, voice production and intelligibility (Deane, 2001a). Therapists can also provide careful assessment and diagnosis of swallowing problems (dysphagia) and advise on swallowing technique, exercise and may offer dietary alternatives and advise on food consistency to reduce the risks of ill health (such as an increased chance of pneumonia) and promote safety and comfort in swallowing (Deane, 2001b).

A Cochrane review of speech therapy for PWP found two randomised controlled trials involving a total of 41 patients. Hours spent in therapy ranged from 10 to 16 hours, and both trials found a statistically significant improvement in loudness, volume and pitch range . Overall the Cochrane review concluded that methodological problems, publication bias, and small sample sizes prevented them from drawing any firm conclusions on the effectiveness of speech therapy (Deane, 2001a). Furthermore there is a wide range of approaches to treat PWP with speech therapy, thus a need to develop a definition of ‘best practice’.

Occupational Therapy

Occupational therapists can help maintain self-care, work and leisure activity for as long as possible, thus maximising independence, and ensure that the home and workplace are safe environments, thus minimising the likelihood of injuries. Interventions may include support in organising the daily routine, learning new skills for alternative or adaptive ways to carry out activities, or providing and advising on specialist equipment or resources, for example, mobility aids, home or car modifications (Deane, 2001c).

A Cochrane review of occupational therapy for PWP found two randomised controlled trials involving a total of 84 patients. Hours spent in therapy ranged from 12 to 20 hours, and both trials found very small improvements in the various outcome measures . Overall the Cochrane review concluded that it is doubtful whether the improvements were statistically significant, and the methodological problems, publication bias, and small sample sizes prevented them from drawing any firm conclusions on the effectiveness of occupational therapy (Deane, 2001c). Furthermore there is a wide range of approaches to treat PWP with occupational therapy, thus a need to develop a definition of ‘best practice’.

Positive Steps – Increasing Usage of Allied Health Services

The National Institute of Clinical Excellence in the UK recommends that all PWP should have access to a PDNS and around 70% of PWP should be services from allied health professionals, despite the lack of large, methodologically appropriate, randomised controlled trials that show a statistically significant improvement in the quality of life of PWP due to PDNS and the use of allied health professionals (NICE, 2006).

The Living with Parkinson’s Disease in the Central West of NSW study found that contact with allied health services was relatively uncommon: 40% of PWP had consulted a physiotherapist; 28% had consulted an occupational therapist; and 4% had consulted a speech therapist. Similarly in the UK, depending on the setting, between 3-20% of PWP had


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seen a speech therapist (Deane, 2001a), between 7-29% had seen a physiotherapist (Deane, 2001d), and between 13-25% had seen a occupational therapist (Deane, 2001c).

The current cost of community based PDNS in WA is around $95,000 per year per PDNS. Based on expert opinion, NICE (2006) advises that the recommended caseload should be about 300 PWP per PDNS. Thus around 182 PDNS (an additional 171 PDNS) are required to service PWP in Australia, costing $17.3 million per annum (an additional $16.2 million per annum) (based on the average cost in WA). To spread the cost across a broader range of diseases, multi-discipline nurses (such as neurological specialist nurses) may also be worth considering.

The May 2004 Federal Government Budget contained funding for reimbursement for referrals to physiotherapists, occupational therapists, and speech therapists provided “for and on behalf of the GP” to patients with chronic conditions and complex care needs who are being managed under a Multidisciplinary Care Plan through the Enhanced Primary Care programme. Each year, up to five such consultations will qualify for the MBS rebate58.

Currently the MBS fee for these referrals is $53.90 per session (must be greater than 20 minutes). Making the conservative assumption that each session takes 1 hour, and around 70% of PWP should be receiving these services (NICE, 2006) then the total additional cost would be around $61.9 million per annum (compared to the current expenditure of $10.3 million per annum).

TABLE 14-1 FINANCIAL COSTS OF IMPROVING ACCESS TO HEALTH SERVICES, 2005

Service Hours Current usage

Additional Cost ($m)

Additional Cost per PWP ($)

Physiotherapy 8-30 hours (≈19) 40% 16.8 310

Occupational therapy 12-20 hours (≈16) 28% 19.8 360

Speech Therapy 10-16 hours (≈13) 4% 25.3 460

PDNS 16.2 300

Total 78.2 1,430 Average hours of treatment in brackets

NICE (2006) however estimates that access to PDNS, physio, speech and occupational therapy services can reduce hospital admissions by 50%, and outpatient attendance by 40%. Thus off-setting the costs of the additional health services by $36.7 million. Consequently, the total financial cost of introducing the NICE re commendations is $41.5 million per annum, or $760 per PWP, and would result in an impr ovement in the quality of life of PWP.

Encouraging GPs to manage PWP under Enhanced Primary Care (EPC) multidisciplinary care plans would improve access to these services.

Positive Steps – Increasing Access to Mental Health Services

Mental health issues, such as depression and anxiety, are common in PWP due to the impacts of the disease on the individual, the pathology of the disease, and the side effects of the medications (see Section 2.3). Quality of life can be directly improved by increasing

58 www.budget.gov.au/2004-05/bp2/html/expense-12.htm


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access to mental health services, which is possible if GPs are encouraged to manage PWP under Enhanced Primary Care (EPC) multidisciplinary care plans.

Positive Steps – Increasing Access to Services in R egional and Remote Areas

Access to GPs and (particularly) specialists and allied health professionals is limited in regional and remote areas (see Figure 14-1). Consequently PWP are particularly susceptible to delayed diagnosis and unnecessary disease burden through reduced access to specialists and allied health services. Furthermore, when PWP travel to metropolitan areas to access medical services, they (and their carers) incur additional transport, communication and accommodation costs, plus the time and effort involved increases psychological and physical stress (such as pain and fatigue).

FIGURE 14-1 PERSONS EMPLOYED IN SELECTED HEALTH OCCUPATIONS PER 100,000 POPULATION

0

20

40

60

80

100

120

140

Major Cities Inner Regional Outer Regional Remote Very Remote

GP

s an

d S

peci

alis

ts p

er 1

00,0

00 P

opul

atio

n

0

50

100

150

200

250

300

350

400

450

Oth

er H

ealth

Pro

fess

iona

ls p

er 1

00,0

00 P

opul

atio

n

GPs

Specialists

Other Health Professionals*

* Includes dental practitioners, pharmacists, occupational therapists, optometrists, physiotherapists, speech pathologists, chiropractors/osteopaths and podiatrists.

Sources: AIHW (2004b), AIHW (2005b)

Rather than PWP and their carers travelling to metropolitan areas, some of these services can be delivered directly to the PWP through:

� Community Outreach Teams : Mobile clinic teams that are able to provide multi-disciplinary services (such as speech therapy, physiotherapy, occupational therapy, dietary advice, a social welfare worker and a Centrelink contact) in regional and country areas.

� Smarter use of new information technologies which can assist in delivering health and support services to people in rural and remote areas, including web-based information resources and messaging, moderated chats and forums, videoconferencing and clinical communications.


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14.2.2 ACCESS TO PHARMACEUTICALS

Section 5.2 noted that pharmaceuticals are equal to the second highest health system cost component (similar to inpatient and outpatient hospital services). Consequently maintaining the viability of the PBS and ensuring access to these drugs for PWP is of vital importance.

Positive Steps - Ropinirole

PBAC had recommended the listing of ropinirole on the PBS for PD in December 1997, but it was never listed as the sponsor decided not to proceed with the listing. In March 2006 PBAC rejected listing of ropinirole for the treatment of restless legs syndrome.

Access to ropinirole for PD is worth revisiting as PBAC has already found it to be cost-effective. Furthermore as different drugs have different side-effects, and people respond to different drugs in different ways, the diversity of the drugs available on the PBS should be maintained. As such, access to pramipexole and rotigotine should also be considered by PBAC.

Positive Steps – Apomorphine

Apomorphine can have a significant positive impact when used as a continuous daytime subcutaneous infusion (rather than rescue injections). However poor medical specialist experience with the drug, misuse by inexperienced practitioners and limited numbers of specialist nurses to initiate and support patients using the treatment hinders its uptake and effective use. Furthermore the cost of infusion devices places an additional restriction on their use. Programs aimed at increasing the knowledge of apomorphine and improving access to the infusion devices, along similar lines to the National Diabetes Services Scheme, is worthy of consideration.

Positive Steps – Recognition of Other Financial (no n-PBS) Impacts

Section 5.4 estimated the additional health system costs due to complications of PD, namely accidental falls and pneumonia. Access to drugs that reduce the occurrence and severity of these complications would increase costs to the PBS but would reduce other health system costs (for example, hospital costs), informal care costs and the likelihood of admission into a nursing home. Greater recognition of these impacts in PBAC policy decision making is required.

14.2.3 ACCESS TO PALLIATIVE CARE

The preferred place of death is at home for a majority of PWP, carers and their families, but this is not always achievable. Only 25% to 40% of people in the final stages of a progressive disease actually achieve the aim of dying at home, while a further 30% remain at home until the final few days of life (Yuen et al, 2003). However, Section 8.2.1 suggests that these rates are probably lower for PWP as very few PWP utilise community based palliative care – suggesting that most PWP spend their final days in a residential aged care facility or in hospital despite many people in the final stages of PD being cared for at home by an informal carer.


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Positive Steps – Planning Palliative Care

Palliative care requirements of people with PD should be considered throughout all phases of the disease, not just near the end. Guidelines specifying indicators at which PWP should be referred to palliative care services or interventions should be developed and implemented.

Positive Steps – Access to Palliative Care and Resp ite Services

Home deaths also impose a considerable burden on the informal carer, physically, financially and mentally, and consequently support for informal carers (through community based palliative care services, respite, and consultancy services) during this time is crucial. Recognition of that PWP require community based palliative care, and training of current service providers in PD specific needs, would improve access to PWP and the quality of services.

Positive Steps – Training of GPs in Palliative Care

GP knowledge of palliative care skills (including symptom management and counselling) and GP time constraints often influence whether GPs can offer adequate services during this time (Yuen et al, 2003). Additional training of GPs in palliative care management techniques would help. Training of PDNS (and other community nurses) in palliative care would also help reduce the time constraints faced by GPs.

14.2.4 MEDICATION AND HOSPITALISATION PROTOCOLS

Medications for PD should not be stopped abruptly (including “drug holidays”) or allowed to fail suddenly due to poor absorption (e.g., gastroenteritis or abdominal surgery) due to the risk of acute akinesia or neuroleptic malignant syndrome (NICE, 2006b). The complex drug regimes and frequent dosing required is often not well managed in hospitals with staff often too busy to deliver the drugs on time, nor realise the importance (especially in later stages)59. Similar issues also exist in nursing homes.

Positive Steps – Improved Hospitalisation Protocols

If a PWP is admitted to hospital then medications should still be taken as normal (with support from hospital staff if necessary). In some cases they may mean allowing self-medication. If adjustment to medications is required, this should only be undertaken by a medical specialist.

Positive Steps – Nurse Education

Additional training of nurses to be aware of sudden changes in PD symptoms (such as the sudden change from the “on” to “off” phase), what patients are capable of doing when in each phase, the risk of medication withdrawal, and drug interactions and contraindications.

14.2.5 YOUNG PEOPLE IN NURSING HOMES

In Section 3.4 we estimated that around 146 people under 65 years are in nursing homes (equal to 1.4% of all PWP aged younger than 65 years and 12.0% of PWP aged younger than 65 years in Stages IV or V).

59 Expert opinion.


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Aged care is inappropriate for younger people because:

� therapeutic input is required to maintain a person’s physical, cognitive and social functioning, but aged care facilities have a lack of rehabilitation orientation;

� staff do not have the requisite skills and knowledge to care for younger people with PD, MS, acquired brain injuries, or muscular dystrophy and staffing levels are insufficient to maintain and promote independence for these people;

� the resources needed to purchase appropriate equipment to support the complex care needs of young people do not exist within this framework; and

� it can substantially reduce wellbeing for younger people to be placed in a restrictive and morbid environment with little or no community involvement or peer support.

Addressing the issue of young people in nursing homes is particularly important for degenerative neurological conditions where the age of onset is often younger than PD (such as MS and muscular dystrophy).

We applaud the recent COAG meeting which addressed some of the above issues, but reiterate that young people with disabilities should have access to community-based, age-appropriate care .

14.2.6 PWP FROM DIVERSE BACKGROUNDS

An emerging issue is the special needs of people from culturally and linguistically diverse backgrounds. People from non-English speaking backgrounds can face added challenges in relation to possibly delayed PD diagnosis, language barriers (e.g., translation of information and support materials), employment obstacles, culturally appropriate services, and individual customs, traditions and values.

Positive Steps – Development of Specialist Resource s

These Australians have equal right to access affordable, quality PD assessment and care services, which can only be available for them if specialist resources are developed to promote access.

14.3 MAINTAINING EMPLOYMENT

The age of onset of PD is during working ages for around 16% of PWP, and consequently often has an impact on the choice to retire early from employment. For people with juvenile or young-onset PD, onset occurs when people are still developing their career, supporting young families, or are financially committed (eg, buying their home). Consequently these people are at most risk of experiencing long-term employment disadvantage and becoming financially disadvantaged, thus further compounding social isolation and inadequate retirement savings in the long-run.

In particular, Section 6 found that PWP retire early if they reach Stages II to III before 54 years for women and 60 years for men. Furthermore PD limits the type of work a PWP could perform (especially labour-intensive tasks) which may necessitate a change in activities and responsibilities, or even a change in occupation or industry, if the PWP continues to work. Consequently over 50% of PWP aged less than 64 years receive some form of income support (see Section 9.1).


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The maintenance of employment is thus a critical fa ctor for PWP to retain maximum health and financial independence in the face of a progressive disease where employment is under increasing threat.

The maintenance of employment is also critical for governments to minimise use of the health system and reduce dependence on income s upport in the long-run.

The first best solution from an economic and equity perspective involves policies that enable PWP to retain employment where possible, while recognising the need to have a solid welfare response for those that cannot maintain employment due to health and mobility restrictions.

Positive Steps – Workplace Accommodation

Historically, poor workplace adaptation and job redesign (including the selective use of adaptive technology, such as disability specialist IT software and modified equipment) have resulted in workplaces becoming inaccessible for PWP as the disease progresses, contributing to the loss of skilled workers as people are forced out of work prematurely.

Small workplace modifications can sometimes make enormous differences. Recently two Federal Government programs – the Workplace Modification Scheme60 or Work Based Personal Assistance61 measures (FACS, 2003) were expanded in the 2005 Federal Budget. Increasing knowledge and use of these programs could significantly assist some PWP and their employers.

The impact of symptoms on the time and effort required to commute to work may also pose a barrier to the maintenance of employment. Increased use of work-from-home arrangements would be advantageous in these situations. Continually improving communications technology means that these arrangements are increasingly possible; however the ability of PWP to use these technologies may act as a barrier and continual education of workers in emerging technologies may be required. Currently the Workplace Modification Scheme can provide funding for domestic modifications or equipment (and associated technical support and training) if directly related to the work and the worker is unable to attend the usual place of work due to their disability. However funding is not available for consumables, such as internet access.

Positive Steps – Employment Support Programs

Despite welcome reforms in recent years, current employment support programs in Australia for people with disabilities still tend not to emphasise retention and protection of existing jobs (rather, finding ‘new’ jobs for the unemployed).

60 Under the Department of Family and Community Services Workplace Modifications Scheme, employers are assisted to provide employment opportunities to eligible job seekers with disabilities through the provision of financial assistance for specific workplace modifications or purchase of specialist equipment (including technical support and training to use the equipment). The primary aim of the Scheme is to provide assistance with the cost of workplace modifications, or special or adaptive equipment for eligible new workers with a disability. Assistance may be extended to some existing workers and to some eligible self-employed persons with disabilities who are participants of the New Enterprise Incentives Scheme. 61 Under the Department of Family and Community Services Personal Assistance Scheme, a personal care worker is provided to assist with eating and toileting at no cost to the employer.


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A key challenge is in introducing seamless employment support programs that involve innovative strategies such as workplace environment adaptation, job restructuring or tailoring, part-time and flexible work-from-home options, and transport assistance, as appropriate. Workers compensation ‘return to work’ or rehabilitation models can be useful – these can determine work capacity on an individual basis. Incentive regimes are also possible that recognise efforts made by both parties in adapting and maintaining employment arrangements. Such schemes should:

� include specialist advice (medical, allied health and specific experts eg, the Chronic Illness Alliance) for capacity reviews and in relation to the individual’s workplace accommodation, routines, situation and capacity/limitations in taking on additional work;

� not be a ‘point in time’ assessment but be cognisant of diagnosis, prognosis and disease progression over time, and allow for regular reviews if the individual’s health or employment status changes suddenly;

� recognise the individual’s health maintenance regime and how this can be preserved in combination with work (eg intermittent days off/job sharing);

� interact on a case-management basis with State funded disability and health services working with the person;

� consider how the individual’s eligibility for Superannuation disability insurance may be affected by the timing of a return to work; and

� contain a thorough and independent appeals mechanism.

Positive Steps – Workplace Discrimination

Some PWP may experience discrimination in their employment once their diagnosis becomes known. Once a job has been lost, finding alternative employment that will accommodate disabilities can be extremely problematic.

� Many prospective employers require details of pre-existing disabilities with consequent reluctance to take on those whose capacity to perform a full range of employment duties.

� Employers may also have concerns about workers compensation liability in the case of hiring workers with a chronic illness.

� The lack of an existing employment relationship and knowledge of the individual also makes it difficult for PWP to break into new jobs.

The linking of managing chronic illness with the workers compensation management of workplace injuries is worthy of further investigation. The methodology involved in modifying duties and workplaces for injured workers returning to work is one that would very much apply to workers with chronic illnesses. Currently there is the anomalous situation where injured workers are taken back because of a statutory obligation, but employers are in no way bound to make any provision for an existing emp loyee who develops a health problem.

In the context of the long term need for greater workforce participation, the cause of injury/disease or the locus of responsibility for providing the support should not be a defining factor. If there is the opportunity for the worker to remain at work with modified duties or workplace, then it should be mandatory for the employer to take reasonable steps, particularly if adaptive resources are available from DEWR, disability services or other sources.


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One idea is for Government contribution to workers’ compensation premiums for those employers who take on workers with a disability. More could be done in negotiation with workers compensation jurisdictions to link requirements for employers to support workers with a chronic illness in the same ways as they do injured workers. All that would be different is that the Federal Government would indemnify employers for costs of modifications for workers with chronic illness and disabilities.

Education and awareness strategies are also needed to counter workplace misperceptions and discrimination against people with disabilities (such as PD), and that induce culture change among employers and employees to identify and implement positive long term solutions. These should cultivate ‘success factors’, namely:

� relationship between employee and employer;

� basic employer knowledge of PD (including the impact of invisible symptoms like fatigue from lack of sleep and memory problems) and sensitivity to the employee’s needs;

� worker’s knowledge of employment rights frameworks such as discrimination and Equal Opportunity legislation;

� options for workplace and job modification/flexibility, including working from home and being able to work outside normal hours;

� effective management of symptoms to facilitate longevity in work; and

� availability of responsive support services into workplaces to assist in workplace accommodation, information provision and disclosure issues.

Finally, job support programs for PWP need to be fully integrated into the range of core services provided for people with disabilities through State and Federal networks, as well as with welfare payment systems and incentives, particularly the nexus with the Disability Support Pension. This would assist PWP easily combine part time employment and part time DSP in order to continue working as much as possible for as long as possible to retain their independence.

14.4 SUPPORTING INFORMAL CARERS

Access Economics (2005) compared the cost of informal care to other care models. The study found that the average cost of informal care provided by primary carers was relatively low ($9,000) when the carer’s time is valued at its opportunity cost. If the carer’s time was valued at replacement cost, then the average cost of a primary carer was much higher ($33,843), approaching that of an EACH package ($37,720) as would be expected, but still less than a high-care residential placement ($48,710).


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TABLE 14-2 AVERAGE COST PER RECIPIENT OF DIFFERENT CARE STREAMS, AUSTRALIA 2005

Total cost 2004-05, $*

Public Share %

HACC 1,681 97.5

CACP 14,115 86

EACH 37,720 95

RACS – low care 30,044 47

RACS – high care 59,532 78

RACS – all 48,710 69

Informal care, primary carers – opportunity cost 9,000 73

Informal care, primary carers – replacement cost 33,843 41

Informal care, all carers – opportunity cost 2,287 61

Informal care, all carers – replacement cost 11,870 35


FIGURE 14-2 AVERAGE COST OF CARE MODELS, AUSTRALIA , 2005

$0 $10,000 $20,000 $30,000 $40,000 $50,000 $60,000 $70,000

RACS:high

EACH

Informal care:primarycarers, rep.cost

RACS:low

CACP

Informal care:primarycarers, opp.cost

HACC

Average cost per care recipient

Total cost

Public contribution


Moreover, the average cost of combining informal primary care, valued at opportunity cost, with a HACC package or CACP was still lower than the cost of a low-care residential place (Figure 14-3).


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FIGURE 14-3 AVERAGE COST, COMBINED CARE PACKAGES

$0 $10,000 $20,000 $30,000 $40,000 $50,000 $60,000 $70,000

RACS:high

EACH+Inf.Care

RACS:low

CACP+Inf. Care

HACC+Inf. Care

Average cost per care recipient


Informal primary care with HACC services was lowest at $10,681; informal primary care with CACP costs around $23,115; RACS low care was around $30,044; EACH plus informal primary care was around $46,720; while RACS high care was greatest at $59,532 per person in 2005. It is noted that these relativities may have changed somewhat by 2007.

As informal carers provide the bulk of the care received by PD, supporting these informal carers is crucial to avoid the additional real resource cost and poorer quality outcome of care being institutionalised. There is an extensive literature on the lower costs and improved outcomes of informal sector care that has led to a policy orientation supporting such care for people with disabilities and the frail aged (called ‘ageing in place’ for the latter group).

Positive Steps – Maintaining Growth in Support Prog rams for Carers

In 2003, data from the SDAC showed that around 37.2% of all primary carers felt they needed more support in their caring activities (ABS 4430.0). Many provide long hours of care because of the lack of other choices. The propensity to provide care may well be lower in the future with inter-generational changes, while the number of people requiring care will grow with demographic ageing and the rising prevalence of chronic disabling conditions.

A key issue is the need for support services to gro w in line with care needs. The constraint in this area is primarily budgetary, while welcoming the assistance to date in this area, such as the Respite care to assist employed carers initiative which, since 2005, is providing $95.5 million of funding over four years to increase in the number of respite services for carers in paid employment and carers re-entering the workforce. This includes increasing the funding to Commonwealth Carer Respite Centres, enabling day respite centres for older Australians to extend their hours of operation. This will enable up to 5,000


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employed carers each to access an average of 480 extra hours of respite in a full working year62.

Adequate ongoing funding injections are required to increase services to carers, in particular for education, peer support and respite. Access Economics (2003) showed that programs that provide these services to carers can have seven-fold returns in terms of improving the quality of life of carers and the people they care for and delaying costly institutionalisations.

Positive Steps –Respite for PWP

Currently there are no data regarding the rate of access to respite services by PWP, and whether the current level of provision is adequate. Additional research into the chronic diseases experienced by current users of respite services would help identify populations and geographic areas in need of additional respite services and better target those services to the client needs. Through the reduced burden placed on the carer, increased access to services may decrease the likelihood of early admission of PWP into residential aged care facilities in the long run.

Positive Steps – Respite for Young PWP

Respite for young PWP and their carers suffers from the same inherent problems as residential care for young PWP – frequently the care is not age-appropriate, respite carers are inadequately trained, availability is not flexible and thus services may not be useable. As a majority of PWP’s main source of care is informal care rather than aged care, access to appropriate respite is important for both the PWP and the carer.

The nature and course of PD means that individuals and families have to adapt to changed circumstances and capacity. Through the progress of the disease, most young PWP continue to have an engagement with the community both in terms of work, family and recreation. The imperative of policy must be to protect and encourage this engagement through education, community support and adaptation, and not force people, even short term, into unsuitable facility based health or disability services.

An inherent flaw is that respite services have arisen from the aged care system, and are not designed for younger people who need to be able to continue their normal activities during respite periods – the respite care thus needs to be lifestyle-friendly and age-appropriate . Moreover, more flexible models of respite care are needed, including overnight and weekend support, cottage style accommodation, extended hours at day centres and extension in many areas where there are access problems and service gaps.

Positive Steps – Respite in Rural and Remote Areas

Similar to access to health services, access to respite for carers in rural and remote areas where there are no family or friends available or willing to undertake respite care is an ongoing concern. We applaud the initiatives in the 2005-06 Federal Government Budget that contained additional funding to increase respite for carers in rural and remote areas through multi-purpose centres.

62 www.health.gov.au/internet/budget/publishing.nsf/Content/health-budget2005-abudget-afact2.htm


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Positive Steps - Workforce opportunities for Inform al Carers

Currently there are few initiatives that target employers of family carers. The goal would be to enable them to develop strategies for more flexible work practices in order to retain participation rates of trained workers. As the demographic transition continues, participation rates – particularly of women – will become increasingly important in maintaining economic growth as well as sustainable public sector revenues from taxation.

Possibilities might include part-time home-based work, work-based adult day-centres, or access to work-based services for family carers such as counselling or exercise programs. In addition, PD awareness and destigmatisation courses could be introduced in workplaces. A few pilot trials of such initiatives should be implemented, based on international pilots.

14.5 FUTURE RESEARCH

Section 5.2 noted that the funding of research for PD was healthy at 4.2% of total health expenditure compared to 2.4% across all health conditions. The returns to investment in medical research in Australia are estimated at 2.4:1 in terms of the value of gains in healthy life (Access Economics, 2003).

Positive Steps – Research Funding

Recent Federal Budgets have made a very strong commitment towards health research. Some of this research funding will be directed towards PD and other degenerative neurological conditions. In particular, research priorities should be directed towards:

� Cause: Understanding of the biomedical causes of PD, including epidemiological (population-based) medical risk factors and public health research (including accurate estimation of the prevalence of PD in Australia).

� Care: Development of a definitive test for PD and effective models (best clinical practice) of diagnosis and care for people with PD, including ways to enhance primary care, allied health services and effectiveness of training interventions.

� Cure: Measures that prevent or postpone the onset of PD, or that slow or reverse disease progression.

Positive Steps – A Collaborative Approach to Resear ch

Research should be collaborative and multidisciplinary, including interacting with other degenerative neurological conditions.

PMSEIC (2003) highlights the unprecedented pace at which neuroscience is expected to progress over the next decade in its report to the June 2003 meeting of the Prime Minister's Science, Engineering and Innovation Council. It made recommendations in relation to:

1 enhanced basic research networking;

2 forming an alliance – the “Brain and Mind Research Alliance” and forming a short-term Neuroscience Consultative Task Force to develop the alliance; and

3 implementing a national approach to brain and mind disorders through the alliance’s action agenda to:

i foster basic research and its translation to consumers, carers and industry;

ii take advantage of neuroscience strength that already exists in Australia, as well as build new networks and research collaborations;


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iii provide national network funding as the ‘glue’ to encourage innovative collaborative ventures;

iv enhance international research and industry links; and

v contribute to policy setting in terms of research setting, health outcome evaluation and ethical issues.

To further develop the recommendations PMSEIC (2003) report, in August 2004 the Minister for Health and Ageing, the Hon Tony Abbott, established the National Neuroscience Consultative Taskforce . The purpose of the Taskforce was to provide advice on how Australia can best harness scientific advances in understanding and managing social and health problems associated with disorders of the mind and brain and to develop strategies to prevent, reduce or contain the chronic and debilitating consequences of these disorders.

The Taskforce received public submissions and undertook a national program of consultations with the neuroscience research community, practitioners and carers, bringing together recognised leaders in the fields of neuroscience, neurosurgery, psychiatry and psychology as well as members with broad experience in the community and consumer sector and in the biotechnology industry. Professor Judith Whitworth, Director of the John Curtin School of Medical Research at the Australian National University, chaired the Taskforce that reported to the Minister in late 2005. However, there appears to have been no further specific or substantial Government response on this issue since that time.

There remains the need to agree and implement a prioritised action agenda.

14.6 A LOUDER VOICE

Positive Steps – A Collaborative Voice

Collaboration with other degenerative neurological conditions, for example through the consumer-based Neuro Alliance, would help critical mass and economies of scale as a coordinated neurological sector for a more effective voice in relation to national policy, as a forum for discussion and with equitable representation for participants.

For example, public relations resources could be pooled and coordinated so to better develop strategic approaches to legislators and the media. Research funding could also be pooled to achieve economies of scale in common issues, such as a combined survey of the prevalence, costs and access to services by people with degenerative neurological conditions.

Marot et al (2003) sets out the rationale for closer collaboration.


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APPENDICES

APPENDIX 1: GPRN

GPRN is based on a survey run by the Health Communication Network (HCN). Each week a panel of 330 participating GPs supply anonymous patient data through Medical Director (patient management software developed by HCN). The data is then compiled by HCN to create a longitudinal, patient-based dataset. The full dataset currently covers 12 million encounters over 5 years. While only 330 GPs participate in the survey, all encounters are recorded (about 5,000 per year) which means that the survey captures 1.8% of all GP encounters.

The Representativeness and Generalisability of GPRN

To assess the representativeness and generalisability of data it is important to consider the target population, the sample frame, response bias, the data collection process, data preparation and analytical biases. There is no one way to determine what data set is best and one is left with value judgements and what is important to one analysis is not so important to another. The key to determine the validity (the capacity of the results to reflect the true distribution of events) of a result is reliability and through cross-validation with other data sources. It is also important to consider the range of responses that appear in the results.

The sample frame has to reflect the actions of “average” GPs (target population ), i.e. GPs in the sample should practice medicine (in terms of treating PD) no differently from the “average GP”. Random selection increases the probability of obtaining a representative sample but response rates decrease the probability of representativeness if there are systematic biases that exclude or discourage certain types of GPs from taking part in the survey.

Previous analysis has shown that GPs participating in GPRN look similar in terms of age and gender to all GPs practicing in Australia for the same time period. Furthermore, uncomplicated hypertension (87 per 1000 encounters, 95%CI: 81.7-92.2) was the most frequent reason or problem managed and paracetamol (29.7 per 1000 encounters, 95%CI: 27.1-32.3) was the most frequent medication prescribed in 2003 – this is nearly exactly the same as BEACH a paper based National survey of General Practice activity, which implies that either both are wrong or both are right.

In general, the data collection process attempts to capture data reflective of real events. When capturing data on drug prescriptions (including the reason for prescribing), data from the actual (primary) prescribing process (the prescription) is considered the best quality – this is what GPRN achieves through the use of Medical Director. While prescribing data is not dispensing data (PBS data records what medications are dispensed under government subsidy), it can be used as a close proxy.

Analysing less frequent events introduces other analytical biases . Other studies (for example, BEACH may have 1000 GPs) may involve more GPs than GPRN, but the ability for the data to inform an analysis about a thinly distributed


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condition like PD can be considerably less. In this case, the general rules to ensure representativeness are:

– the more clusters the better (groups of doctors/patients with similar characteristics); and

– the number of clusters should be representative of the total number of clusters for each specific phenomena.

If the clusters are representative of all clusters, then cluster size becomes important as more observations within a cluster brings about greater precision as long as the estimates employ appropriate statistical techniques that consider the study design.

This becomes even more so important with the less frequent events when the impact of clustering is possibly the greatest (for example, GPs specialising in conditions largely affecting older persons) and the number of GPs providing data is considerably less. This would be the case with PD where it is a thinly distributed condition and what we are seeing is the way that nearly 300 GPs are managing PD. There would be few studies that have such a sample size.

Overall, analyses with GPRN have shown that electronic records in Australian general practice are able to serve as a means of gathering representative statistics of general practice activity and that 300 GPs proving 1.5 million consultations per year is the most reliable and generalisable detailed GP activity data set currently available in Australia.

Using data on GPs’ reasons for prescribing for PD drugs also suffers from some additional issues, specific to PD:

� Due to complications in dosage and drug combinations, it is likely that most prescriptions for PD drugs for PD and schizophrenia are at least initiated by specialists (which can be neurologists (treating PD), psychiatrists (treating schizophrenia and related disorders), physicians (treating both) or others) and subsequently followed by the treating GP. Therefore the use of PD drugs in general practice to treat a range of diseases is likely to be representative of the total population. While there are clearly access issues to specialists in rural/remote areas, it is likely that rural GPs also follow this prescribing pattern.

� The GPRN survey does not track individual patients across doctors, thus the survey may double count patients who change doctors. While this may be less likely in terms of PD (because the disease mainly affects older people and slight changes in drug dosages are extremely important for the effective treatment of the disease) it is more likely in terms of other diseases which use PD drugs to treat the disease (such as schizophrenia where the patients are young and inherently unstable).

� For PD, the data still remains captive to high levels of under-diagnosis and misdiagnosis of PD.

A similar methodology could be conducted using the Bettering The Evaluation And Care Of Health (BEACH) survey. However the GPRN data has a higher GP encounter sample size because it collects information on all encounters per GP, while BEACH only collects data on 100 consecutive encounters per GP, thus it is more likely to pick up consultations managing PD. It also avoids other problems associated with BEACH:


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� Because GPRN is IT based and the system produces the pharmaceutical script and requests for referrals and pathology testing, it avoids problems with errors in reading GP’s handwriting. It also has an inbuilt auditing function to ensure consistency of survey answers.

� There is no “survey fatigue” with GPRN because the data is captured from the IT program that is used every day by the doctors for managing patient records.

� GPRN may have some selective sample bias in favour of younger or more technology savvy GPs, but IT use among GPs is high and rising.

While GPRN collects much of the same information as BEACH (including private prescriptions), it does not collect:

� SAND data, based on a sub-sample methodology, on population risk factors, such as smoking status, alcohol consumption, body mass index (the option is in HCN’s Medical Director package but it is not compulsory to enter this information).

� Some treatments administered by the GP, for example counselling.

While this information may be interesting from a clinical perspective, is not necessary for this report on the costs of PD.


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APPENDIX 2: PREVALENCE BY DISEASE STAGE

TABLE A-1 PWP BY DISEASE STAGE, PD MEDICATIONS METHODOLOGY, MALES

I II III IV V Total 0-4 0 0 0 0 0 0 5-9 0 0 0 0 0 0 10-14 0 0 0 0 0 0 15-19 0 0 0 0 0 0 20-24 0 0 0 0 0 0 25-29 0 0 0 0 0 0 30-34 195 49 0 0 0 244 35-39 121 30 0 0 0 152 40-44 261 65 0 0 0 326 45-49 341 352 214 24 0 931 50-54 354 248 217 149 60 1,027 55-59 394 272 189 91 42 988 60-64 935 787 599 284 119 2,723 65-69 1,137 940 787 452 198 3,514 70-74 1,565 1,296 1,075 607 278 4,822 75-79 1,943 1,619 1,348 762 347 6,018 80-84 1,014 987 875 498 227 3,602 85-89 565 672 695 453 213 2,598 90+ 147 225 327 282 159 1,140

Total 8,973 7,542 6,325 3,600 1,644 28,084

TABLE A-2 PWP BY DISEASE STAGE, PD MEDICATIONS METHODOLOGY, FEMALES

I II III IV V Total 0-4 0 0 0 0 0 0 5-9 0 0 0 0 0 0 10-14 0 0 0 0 0 0 15-19 0 0 0 0 0 0 20-24 0 0 0 0 0 0 25-29 0 0 0 0 0 0 30-34 0 0 0 0 0 0 35-39 0 0 0 0 0 0 40-44 139 35 0 0 0 173 45-49 317 79 0 0 0 396 50-54 148 156 95 11 0 409 55-59 511 287 220 153 62 1,232 60-64 518 451 320 122 53 1,463 65-69 971 764 638 378 161 2,911 70-74 1,398 1,145 920 496 227 4,185 75-79 1,654 1,418 1,187 664 298 5,222 80-84 1,491 1,386 1,229 717 329 5,152 85-89 881 892 854 536 252 3,415 90+ 353 464 577 448 240 2,082

Total 8,379 7,076 6,039 3,524 1,621 26,639


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TABLE A-3 PWP BY DISEASE STAGE, BOD METHODOLOGY, MALES

I II III IV V Total 0-4 0 0 0 0 0 0 5-9 0 0 0 0 0 0 10-14 0 0 0 0 0 0 15-19 0 0 0 0 0 0 20-24 0 0 0 0 0 0 25-29 0 0 0 0 0 0 30-34 0 0 0 0 0 0 35-39 0 0 0 0 0 0 40-44 6 2 0 0 0 8 45-49 69 26 7 1 0 104 50-54 236 129 61 14 4 444 55-59 519 349 215 79 28 1,190 60-64 554 550 440 203 80 1,828 65-69 743 579 522 346 156 2,346 70-74 1,667 996 667 357 169 3,856 75-79 2,360 1,886 1,320 539 219 6,325 80-84 1,441 1,633 1,484 812 342 5,713 85-89 479 655 781 576 275 2,766 90+ 151 232 367 335 200 1,285 Total 8,227 7,038 5,864 3,262 1,472 25,863

TABLE A-4 PWP BY DISEASE STAGE, BOD METHODOLOGY, FEMALES

I II III IV V Total 0-4 0 0 0 0 0 0 5-9 0 0 0 0 0 0 10-14 0 0 0 0 0 0 15-19 0 0 0 0 0 0 20-24 0 0 0 0 0 0 25-29 0 0 0 0 0 0 30-34 0 0 0 0 0 0 35-39 0 0 0 0 0 0 40-44 1 0 0 0 0 1 45-49 6 3 1 0 0 10 50-54 56 20 5 2 0 83 55-59 230 116 50 11 3 409 60-64 490 323 191 64 21 1,090 65-69 914 664 463 209 81 2,331 70-74 1,469 1,174 896 448 188 4,176 75-79 1,902 1,806 1,551 849 372 6,480 80-84 1,358 1,745 1,812 1,156 537 6,608 85-89 644 849 1,111 901 459 3,963 90+ 367 490 697 603 363 2,521

Total 7,437 7,190 6,778 4,244 2,024 27,673


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APPENDIX 3: EXPECTED LIFETIME EARNINGS

TABLE A-5 AVERAGE EMPLOYMENT RATE AND AWE IN THE AUSTRALIAN POPULATION

Chance of Being Employed (%) Average Weekly Earnin gs ($) Age Males Females Males Females

0-4 0.0 0.0 0 0 5-9 0.0 0.0 0 0 10-14 0.0 0.0 0 0 15-19 55.8 58.9 268 201 20-24 85.2 78.8 571 490 25-29 89.9 74.8 917 681 30-34 90.3 68.7 917 681 35-39 90.6 70.8 1065 658 40-44 89.4 75.0 1065 658 45-49 90.0 77.4 1076 679 50-54 86.0 68.7 1076 679 55-59 72.8 52.7 1009 662 60-64 50.8 28.1 862 589 65-69 20.7 8.5 578 389 70-74 5.9 1.3 578 389 75-79 0.0 0.0 578 389 80-84 0.0 0.0 578 389 85-89 0.0 0.0 578 389 90+ 0.0 0.0 578 389

Source: ABS 6105.0, ABS 6310.0 (Indexed to $2005).

TABLE A-6 EXPECTED RETIREMENT AGE AND REMAINING LIFETIME EARNINGS ($2005)

Expected Retirement Age if Employed

Expected Remaining Lifetime Earnings ($m)

Age Males Females Males Females 0-4 63 60 1.03 0.57 5-9 63 60 1.12 0.62 10-14 63 60 1.20 0.67 15-19 63 60 1.30 0.72 20-24 63 60 1.36 0.75 25-29 63 60 1.34 0.70 30-34 63 60 1.22 0.62 35-39 63 60 1.10 0.54 40-44 63 60 0.92 0.46 45-49 63 60 0.74 0.36 50-54 63 61 0.53 0.24 55-59 64 62 0.32 0.13 60-64 65 64 0.15 0.05 65-69 68 68 0.04 0.01 70-74 72 72 0.01 0.00 75-79 77 77 0.00 0.00 80-84 82 82 0.00 0.00 85-89 87 87 0.00 0.00 90+ 92 92 0.00 0.00

Sources: ABS 6105.0, ABS 6310.0 (Indexed to $2005)

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