supportive care audit 2013 - 2014 · 2016-05-12 · pastoral care, psychology, palliative care and...

Supportive Care Audit 2013 - 2014

Austin Health

Melissa Shand Service Improvement Facilitator

NEMICS May 2015

Austin Health Supportive Care Screening Report

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Acknowledgments Mandy Byrne

NEMICS Cancer and Data Information Analyst

Sara Jorgensen and Catherine Johnson

Austin Health supportive care project officers


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Table of Contents

1. Executive summary .................................................................................................................................. 5 2. Background............................................................................................................................................... 7 3. Aim ........................................................................................................................................................... 7 4. Methodology ............................................................................................................................................ 7 5. Results and findings ................................................................................................................................. 9

5.1. Population ................................................................................................................................... 9 5.2. Supportive care screening at Austin Health .............................................................................. 12 5.3. Distress score ............................................................................................................................ 20

6. Problem identified .................................................................................................................................. 23 7. Screening outcomes ............................................................................................................................... 27

7.1. Information provided ................................................................................................................ 27 7.2. Discussion provided ................................................................................................................... 28 7.3. Referrals .................................................................................................................................... 29

8. Discussion ............................................................................................................................................... 31 8.1. Methodology ............................................................................................................................. 31 8.2. Overview of results .................................................................................................................... 31

9. Recommendations ................................................................................................................................. 32 10. Appendices ............................................................................................................................................. 34

10.1. Appendix 1 Problems identified by screening unit: .................................................................. 34

List of graphs

Graph 1 Age at time of screen: Austin Health ............................................................................................. 10 Graph 2 Age at time of screen: tumour type .............................................................................................. 11 Graph 3 Percentage of screens by tumour type ......................................................................................... 12 Graph 4 Percentage of screens undertaken by screening unit ................................................................... 14 Graph 5 Tumour type by screening unit: Oncology ward ........................................................................... 15 Graph 6 Tumour type by screening unit: Radiation therapy ....................................................................... 16 Graph 7 Tumour type by screening unit: Day oncology .............................................................................. 17 Graph 8 Tumour type by screening unit: Palliative care ............................................................................. 18 Graph 9 Tumour type by screening unit: Specialist clinic ........................................................................... 19 Graph 10 Distress score by percentage of total screens ............................................................................... 20 Graph 11 Percentage of distress score by tumour type ................................................................................ 21 Graph 12 Distress score by screening unit: percentage of total screens ...................................................... 22 Graph 13 All problems identified: highest to lowest .................................................................................... 25 Graph 14 Information provided by distress score ......................................................................................... 27 Graph 15 Discussion provided by distress score ........................................................................................... 28


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List of tables

Table 1 Number of screens offered per patient ...........................................................................................9 Table 2 Age at time of screen: Austin Health ............................................................................................ 10 Table 3 Age at time of screen: tumour type .............................................................................................. 11 Table 4 Screening at Austin Health by tumour type .................................................................................. 13 Table 5 Screening clinician ......................................................................................................................... 14 Table 6 Number of screens undertaken by screening unit ....................................................................... 15 Table 7 Tumour type by screening unit: Oncology ward ........................................................................... 15 Table 8 Tumour type by screening unit: Radiation therapy ...................................................................... 16 Table 9 Tumour type by screening unit: Day oncology ............................................................................. 17 Table 10 Tumour type by screening unit: Palliative care ............................................................................. 18 Table 11 Tumour type by screening unit: Specialist clinic ........................................................................... 19 Table 12 Tumour type by screening unit: proportion of screens ................................................................. 19 Table 13 Distress score by percentage of total screens ............................................................................... 20 Table 14 Percentage of distress score by tumour type ................................................................................ 21 Table 15 Distress score by screening unit .................................................................................................... 22 Table 16 All problems identified by domain ................................................................................................ 23 Table 17 Problems identified: highest to lowest (1 in 5 people identify problem) ..................................... 26 Table 18 Information provided by distress score ......................................................................................... 27 Table 19 Discussion provided by distress score ........................................................................................... 28 Table 20 Referral status ............................................................................................................................... 29 Table 21 Referrals made: most often to least often .................................................................................... 29 Table 22 Referrals offered but declined ....................................................................................................... 30 Table 23 Frequency of problems identified by screening unit: fatigue ....................................................... 34 Table 24 Frequency of problems identified by screening unit: worry ......................................................... 34 Table 25 Frequency of problems identified by screening unit: pain ............................................................ 34 Table 26 Frequency of problems identified by screening unit: nervousness .............................................. 35 Table 27 Frequency of problems identified by screening unit: sadness ...................................................... 35 Table 28 Frequency of problems identified by screening unit: sleep .......................................................... 35 Table 29 Frequency of problems identified by screening unit: fears ........................................................... 35 Table 30 Frequency of problems identified by screening unit: eating......................................................... 36 Table 31 Frequency of problems identified by screening unit: getting around ........................................... 36


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Supportive Care Audit 2013 - 2014 Austin Health

1. Executive summary The 2013 – 2014 NEMICS regional supportive care audit was initiated by the NEMICS supportive care project officers. This is the first time an audit has been undertaken to identify the supportive care needs of the NEMICS cancer population. From the audit data collected, individual health service information was extracted and evaluated to provide information on the supportive care needs of their cancer population. Using the NCCN Distress Thermometer and Problem Checklist, Austin Health audited total of 1057 screens on 775 individual patients over an 18 month period, 1 January 2013 to 30 June 2014. It is acknowledged that this report reflects the findings from these screens and not from the whole oncology population attending Austin Health during the time period. Patients who were screened most commonly were those with breast, lung, haematological, genitourinary and colorectal cancers; most screens were completed by a nurse (60%) or specialist nurse (20%). Screening was undertaken within oncology services: day oncology, inpatient oncology wards, the palliative care unit, radiation therapy and specialist clinics. The highest number of screens (26.5%) were completed by the inpatient oncology wards, as were the majority of repeat screens (46% of the total screens undertaken on the wards). Tumour types most commonly screened within units varied, potentially reflecting treatments received and available systems and resources in place to support screening. In relation to distress scores recorded, over half of the people screened on the palliative care unit (62%), in specialist clinics (61%), on the inpatient oncology wards (51%) and in day oncology (48%) identified a score of 4 or more. Whilst the precise meaning of distress scores is debated, knowledge that patients attending these services may report greater distress could assist services to monitor patients and provide self-management support or early interventions to reduce the impact of distress. Of the 1057 supportive care screens recorded, 984 completed the problem checklist. A total of 7153 problems were identified across all problem domains with a range of problems identified regardless of tumour type. Considered by domain, problems were recorded as follows: practical domain 4%; family domain 2%; emotional domain 29%; and physical domain 65%. Different numbers of problems are listed in each domain and this needs to be taken into account when interpreting these figures. Emotional and physical domain problems featured with fatigue and worry being identified by half of the people screened. Problems with pain, nervousness, sadness, sleep, fears, eating and getting around were also commonly reported. Despite key commonly identified problems; supportive care problems reported by individual patients varied greatly. From a service-wide perspective, this variance poses challenges for systematically identifying and addressing individual patients’ specific needs. This may support the use of a checklist to efficiently enable individual patients to flag specific problems. Checklists enable patients to be active in identifying their problems and educates them that experiencing problems is common, and to ask for help. Building patient health literacy to actively recognise and report supportive care problems is important in the setting of great variance in problems reported, increasing numbers of cancer patients and limited resources. At the system-level, opportunities exist to scope existing/develop new evidence-based information resources, interventions and services to more systematically address commonly reported problems. Given the prevalence of fatigue and worry, thought could be given to systematically providing ‘at risk’ patients


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early on with evidence-based resources to aid patient health literacy and self-management of these problems. Breaking down the problems identified by screening unit could provide opportunities for cancer services to take a service wide approach to addressing patient needs. Understanding the problems most commonly reported by screening unit and tumour type could assist cancer services and units to take a systematic approach to providing targeted strategies, information and referrals/services early. Building capacity in terms of triage and referrals following screening is a work in progress at Austin Health. Due to variations in the quality of the information relating to this recorded in the medical record, limited conclusions can be drawn from the available data. Of the screens that recorded this information (788), 18% recorded that information had been provided, 63% recorded that no information was provided and a further 19% did not record whether information was provided. A majority of medical record forms (80%) showed evidence of a discussion taking place following completion of the screening tool. Given that screening processes implemented at Austin Health incorporate a discussion following all screens, the high rate of discussions occurring after a screen is expected; however a 100% compliance rate should be aimed for. Of the 1001 referrals recorded as offered, 724 (72.3%) were made. Referrals audited included only first tier referrals as a result of the supportive care screen; additional referrals made following assessment by the clinician/service referred to were not audited. Most referrals (98%) were made to services provided by Austin Health. Of these, the services most referred to were: social work (24.3%), dietetics (17.7%) and other (10.8%). Only 16 of the 724 (2%) referrals made were for community services. Of these, only 1 was made to a support group and 1 to Cancer Council Victoria. Data was not collected on why referrals were made to individual services; however given the high number of screens identifying problems in the emotional domain, the higher number of referrals to social work, pastoral care, psychology, palliative care and counselling (252 referrals or 35%) would be expected. In relation to the problems identified in the physical domain, there were 375 referrals or 52% made to dietetics, GP/Dr, physiotherapy, occupational therapy, nursing, speech pathology, stomal therapist, massage therapy and lymphoedema clinic. Given the high prevalence of fatigue amongst the audit sample, the relatively low rates of referral to physiotherapy/occupational therapy/group fatigue management interventions or community rehabilitation services seem unusual and may warrant further enquiry. These audit findings provide an opportunity for Austin Health oncology services to review a sample of needs identified by tumour type and screening location to consider whether the right supports are in place to address identified needs. The majority of referrals made following screening were to services offered by Austin Health. Building relationships with cancer-related non-government organisations and community health and rehabilitation services could assist oncology staff to understand the services available, increase access to a broad range of varied services and provide cancer patients with a choice to receive their support services within their local community. NEMICS has commenced initial work to strengthen these relationships and referral pathways.


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2. Background A key priority of the cancer reform agenda is the identification and management of supportive care needs in the cancer population. This is underpinned by the 2009 policy: Providing optimal cancer care – supportive care policy for Victoria. This policy outlines the following strategic directions for supportive care provision:

• identifying the supportive care needs of people affected by cancer

• capacity building for optimal supportive care

• implementing supportive care screening into routine practice

• addressing supportive care needs — referral and linkages. Supportive care (SC) screening using the NCCN Distress Thermometer (DT) and Problem Checklist commenced across the north eastern region of Melbourne in 2010 via a grants program funded by NEMICS. Participating health services included: Austin Health, Eastern Health, Mercy Hospital for Women and Northern Health. Project officers have been located in each of the health services to raise awareness of the supportive care needs of cancer patients, drive implementation and build capacity to address supportive care needs through education and resource development. In 2013, in collaboration with SC project officers, NEMICS developed a supportive care screening database to assist health services to monitor and report on the supportive care issues affecting our cancer population. The database was based on the items within the 2013 NCCN DT and Problem Checklist.

3. Aim The aim of the study was to undertake a detailed audit of a sample of the screened population at Austin Health to explore their supportive care needs profile. Analysis of the data includes profiles of population demographics, tumour streams, ICS, distress levels, problems identified and referrals made.

4. Methodology Screens entered and included in this audit report are from 1 January 2013 to 30 June 2014. Cases were identified using three methods:

1. The Department of Health Performance Indicator audit identifies newly diagnosed cancer patients who have had a supportive care screen. The 2013 audit was used to identify patients who had a supportive care screen completed.

2. In 2013 the AH SC project officers undertook a wider SC screening audit. Admission lists for day oncology, radiotherapy and the inpatient oncology wards were reviewed and all screens for the timeframe selected were entered. This audit included repeat screens.

3. The Austin Health SC project officer is required to submit six monthly project reports to NEMICS. All supportive care screens undertaken at Austin Health for a one month period were entered into the database. Data was collected for June and December 2013.

Duplicate screens were removed from the sample. The following data was collected for all screens, including those that were declined:

• Tumour type

• Age at time of screen

• Location of screening

• Treatment at the time of the screen

• Designation of clinician who undertook the screen


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The following additional data was collected on screens that completed the Distress Thermometer and Problem Checklist.

• Distress Score

• Problems identified on the problem checklist

• Intervention that occurred at completion of the screen: - Did a discussion take place to address the need/s identified? - Was information provided? - Was a referral was made? - Service/s referred to

This data provides a snapshot of screening at Austin Health. Included are newly diagnosed cases of cancer as well as repeat screening for patients who have contact with individual services over a long period of time or who have attended a number of treatment modalities or units in which screening occurs.


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5. Results and findings 5.1. Population A total of 775 patients were included in the Austin Health supportive care audit. There were 1057 screens completed and recorded in the database. For this early data analysis, declined screens are included as they are recorded as screens done. Table 1 summarises the number of screens completed by the number of patients. For example 592 patients completed 1 screen, 120 patients completed 2 screens etcetera. This shows that at Austin Health 465 or 44% of screened patients are receiving more than one supportive care screen throughout their cancer treatment. Table 1 Number of screens offered per patient

Number of screens offered

Number of patients Number of screens

1 592 592 2 120 240 3 33 99 4 25 100 5 4 20 6 1 6

Total 775 1057 Analysis of age and tumour type will occur using the total number of patients (775) rather than the total number of screens.


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Age: Graph 1 and table 2 show the distribution of screens across age groups. A total 565 patients or 84.6% of the patients screened were aged 50 and above. Age at which screening occurs at Austin Health broadly reflects cancer prevalence by age in Victoria.

Graph 1 Age at time of screen: Austin Health Table 2 Age at time of screen: Austin Health

Less than 50

years 50 - 69 years 70 or more

years Not recorded Grand Total

Number of screens 117 345 311 2 775 Percentage of screens 15.1% 44.5% 40.1% 0.3% 100.0%

15.1%

44.5%

40.1%

0.3%

Age at time of screen n = 775

Less than 50 years

50 - 69 years

70 or more years

Not recorded


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Graph 2 and table 3 show age groups by each tumour type. Due a number of factors, there is variation in the number of screens completed across tumour types. It is therefore difficult to draw direct comparisons however this does provide a snapshot of the screening rate by age group for each tumour type.

Graph 2 Age at time of screen: tumour type Table 3 Age at time of screen: tumour type

Tumour Type Less than 50 years

50 - 69 years 70 or more years

Not recorded Total

Breast 37 68 30 1 136 Lung 4 55 48

107

Haematological 16 42 38 1 97 Genitourinary 3 35 52

90

Colorectal 12 38 39

89 Head and Neck 8 33 31

72

Upper GI 2 17 27

46 CNS 17 20 6

43

Other 4 14 14

32 Skin 5 8 11

24

Not recorded 7 5 7

19 Gynaecological 1 8 4

13

Thyroid 1

2

3 Bone, soft tissue

1 1

2

Hepatoma

1 1

2 Total 117 345 311 2 775

0 10 20 30 40 50 60 70 80

Num

ber o

f scr

eens

Age at time of screen by tumour type n = 775

Less than 50 years

50 - 69 years

70 or more years

Not recorded


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5.2. Supportive care screening at Austin Health Graph 3 and table 4 demonstrate rates of screening at Austin Health by tumour type. According to the Cancer in Victoria 20131 report, the most commonly diagnosed cancer types across Victoria are prostate, breast, bowel (colon and rectal), lung and melanoma. At Austin Health, rates of screening by tumour type vary from rates of cancer diagnoses across the state; however the following needs to be considered when interpreting this data:

• Varied availability of specialist nursing staff to undertake the screening. Where there are specialist nursing staff in place, for example, Breast Care Nurses, screening rates tend to be higher

• Different screening policies on specific units, for example if a patient receives cancer treatment in a surgical ward where screening does not occur as part of standard care then screening rates for that tumour type will be lower.

• The length and intensity of treatment for different tumour types, including the number of different screening units a person may use to receive their cancer treatment.

Graph 3 Percentage of screens by tumour type

1 Thursfield V, et al. Cancer in Victoria: Statistics & trends 2013. Cancer Council Victoria, Melbourne 2014

0% 2% 4% 6% 8%

10% 12% 14% 16% 18% 20%

Perc

enta

ge o

f scr

eens

Percentage of screens by tumour type n = 775


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Table 4 Screening at Austin Health by tumour type Tumour type Number of screens Percentage of screens Breast 136 17.5% Lung 107 13.8% Haematological 97 12.5% Genitourinary 90 11.6% Colorectal 89 11.5% Head and Neck 72 9.3% Upper GI 46 5.9% CNS 43 5.5% Other 32 4.1% Skin 24 3.1% Not recorded 19 2.5% Gynaecological 13 1.7% Thyroid 3 0.4% Bone, soft tissue 2 0.3% Hepatoma 2 0.3% Total 775 100.0%


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Screening clinician: Table 5 shows that at Austin Health, most screens are completed by oncology and specialist nursing staff. Table 5 Screening clinician

Screening Clinician Number of screens Nurse 637 Other 3 Pastoral care 1 Specialist nurse 215 Unable to determine 105 Not recorded 96 Total 1057

Screening unit: From the audit sample, graph 4 shows that most screening occurs in the inpatient oncology ward, followed by radiation therapy, day oncology, specialist clinics and the palliative care unit.

Graph 4 Percentage of screens undertaken by screening unit

17.8%

26.5%

15.9%

19.6%

16.4%

1.2% 0.6% 2.1%

Screening unit by % of total screens n = 1057

Day oncology

Oncology ward

Palliative care unit

Radiation therapy

Specialist clinic (OP)

Surgical ward

Other

Not recorded


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Table 6 shows the number of screens and repeat screens by unit. The inpatient oncology wards complete the highest number (initial and repeat) screens. Table 6 Number of screens undertaken by screening unit

Screening Unit 1 screen 2 screens 3 screens 4 screens Total patients

Total screens

% of total screens

Oncology ward 150 33 12 7 202 280 26.5% Radiation therapy 205 1

206 207 19.6%

Day oncology 177 4 1

182 188 17.8% Specialist clinic (OP) 150 7 3

160 173 16.4%

Palliative care unit 102 17 4 5 128 168 15.9% Not recorded 17 1 1

19 22 2.1%

Surgical ward 11 1

12 13 1.2% Other 6

6 6 0.6%

Total 915 1057 100.0% The following graphs and tables summarise patients screened by tumour type and screening unit. Supportive care screening policy on the oncology wards is to screen patients on admission to the ward. Graph 5 and table 7 show that inpatients with haematological cancer are most likely to be screened, followed by patients with lung cancer and colorectal cancer. The high rate of screening for haematological patients suggests these patients are receiving multiple screens in line with their multiple admissions.

Graph 5 Tumour type by screening unit: Oncology ward Table 7 Tumour type by screening unit: Oncology ward

Haem Lung CRC Breast H & N GU CNS UGI Skin Gynae Hepa toma

Thyroid Other Not recorded

Total

% of screens 33.6% 15.7% 7.9% 6.8% 6.1% 5.7% 5.0% 4.3% 2.1% 1.1% 0.7% 0.4% 4.6% 6.1% 100.0% No of screens 94 44 22 19 17 16 14 12 6 3 2 1 13 17 280

0% 5%

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

Tumour type by screening unit: Oncology ward

n = 280


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Graph 6 and table 8 show that the most commonly screened tumour types at the radiation therapy service are breast, followed by genitourinary, lung and head and neck.

Graph 6 Tumour type by screening unit: Radiation therapy Table 8 Tumour type by screening unit: Radiation therapy Breast GU Lung H & N Haem CNS Skin CRC UGI Gynae Thyroid Other Not

recorded Total

% of screens 29.5% 15.9% 13.5% 13.5% 5.3% 4.8% 4.8% 4.3% 2.4% 1.9% 0.5% 2.4% 0.5% 99.5% No of screens 61 33 28 28 11 10 10 9 5 4 1 5 1 207

0% 5%

10% 15% 20% 25% 30% 35%

Tumour type by screening unit: Radiation therapy

n = 207


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Similarly, graph 7 and table 9 show that breast, colorectal and lung tumour types are screened most often at the day oncology unit.

Graph 7 Tumour type by screening unit: Day oncology Table 9 Tumour type by screening unit: Day oncology

Breast CRC Lung Haem UGI GU CNS Skin H & N Gynae Thyroid Other Total % of screens 31.4% 13.8% 13.8% 12.8% 11.7% 5.9% 3.7% 2.7% 1.6% 0.5% 0.5% 1.6% 100.0% No of screens 59 26 24 26 22 11 7 5 3 1 1 3 188

0%

5%

10%

15%

20%

25%

30%

35%

Tumour type by screening unit: Day oncology n = 188


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Graph 8 and table 10 show a different picture on the inpatient palliative care unit, with colorectal, lung and upper GI tumour types screened most of often.

Graph 8 Tumour type by screening unit: Palliative care Table 10 Tumour type by screening unit: Palliative care CRC Lung UGI Breast GU H & N Skin Gynae Haem CNS Hepa

toma Other Not

recorded Total

% of screens 18.5% 16.1% 15.5% 8.9% 8.9% 8.3% 3.6% 3.6% 3.0% 2.4% 0.6% 9.5% 0.6% 100.0% No of screens 31 27 26 15 15 14 6 6 5 4 1 16 1 168

0%

5%

10%

15%

20%

Tumour type by screening unit: Palliative care unit

n = 168


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Graph 9 and table 11 show that specialist clinics screen fewer tumour types than other screening units. Tumour types screened include lung, colorectal, breast, CNS, head and neck and genitourinary. These clinics most commonly have specialist oncology nurses or support staff available. For example, breast care nurses, prostate cancer nurse, lung specialist clinic nurses, brain tumour support officer and oral chemotherapy nurse.

Graph 9 Tumour type by screening unit: Specialist clinic Table 11 Tumour type by screening unit: Specialist clinic

Lung CRC Breast CNS H & N GU UGI Skin Not recorded

Total

% of screens 20.2% 19.7% 17.3% 13.9% 13.3% 12.1% 1.7% 0.6% 1.2% 100.0% No of screens 35 34 30 24 23 21 3 1 2 173

Table 12 demonstrates the spread of screening across units. For this table the following data has been removed:

• All tumour types with less than 10 people screened

• All screens where tumour type was recorded as ‘other’ or ‘not recorded’. The oncology ward, radiation therapy, day oncology and inpatient palliative care unit all demonstrated screening across all tumour types. Table 12 Tumour type by screening unit: proportion of screens

Screening unit Breast n = 194

Lung n = 166

Haem n = 141

CRC n = 122

GU n = 101

H & N n = 87

UGI n = 71

CNS n = 59

Skin n = 29

Gynae n = 15

Oncology ward 10% 27% 67% 18% 16% 20% 17% 24% 22% 20% Radiation therapy 32% 17% 8% 7% 33% 32% 7% 17% 35% 26% Day oncology 30% 16% 17% 21% 11% 3.5% 31% 12% 17% 7% Specialist clinic 15% 21% 28% 21% 26% 4% 41% 3% Palliative care unit 8% 16% 4% 25% 15% 16% 37% 7% 22% 40% Not recorded 0.5% 3% 4% 2% 2.5% 1% 1% Surgical ward 4% 1% 2% 1% 7% other 0.5% 1% Total 100% 100% 100% 100% 100% 100% 100% 100% 100% 100%

0%

5%

10%

15%

20%

25%

Tumour type by screening unit: Specialist clinic

n = 173


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5.3. Distress score Graph 10 and table 13 show that of the 1057 screens audited, 984 (93.1%) completed the Distress Thermometer and Problem Checklist (73 declined the screen). Of the 984 screens completed, 21 did not record a distress score. These have been included in the analysis as they identified problems on the problem checklist. Higher scores on the Distress Thermometer are generally interpreted as suggestive of higher levels of distress. Patients reported a range of distress scores:

• Nearly half, 46.6% reported a distress score of less than 4

• 37.8% reported distress of between 4 and 8

• 13.4% reported distress of 8 or more.

Graph 10 Distress score by percentage of total screens Table 13 Distress score by percentage of total screens

Less than 4 Between 4 and 8

8 or more Missing Grand Total

Total 459 372 132 21 984 % Total 46.6% 37.8% 13.4% 2.1% 100.0%

46.6%

37.8%

13.4%

2.1%

Distress score Percentage of total screens

n = 984

Less than 4

Between 4 and 8

8 or more

Missing


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Graph 11 and table 14 show that most tumour streams reported similar patterns of distress scores. Skin, thyroid and hepatoma tumour streams were the exception with higher numbers (approximately 69%) recording a score of 4 or less. As low numbers of screens were completed for these tumour types, further data is required to clarify whether these tumour groups consistently report lower overall distress.

Graph 11 Percentage of distress score by tumour type Table 14 Percentage of distress score by tumour type

Distress score

Breast CNS CRC GU Gynae Haem H & N Hepa toma

Lung Skin Thyroid UGI Other Not recorded

Total

Less than 4 42% 47% 42% 48% 40% 48% 41% 67% 41% 69% 67% 44% 43%

43%

Between 4 and 8 37% 39% 42% 37% 33% 29% 39% 33% 35% 14% 33% 42% 36% 4% 35% 8 or more 20% 3% 11% 11% 20% 6% 15% 0% 16% 10% 0% 8% 14%

12%

Not recorded 1% 10% 5% 5% 7% 16% 5% 0% 8% 7% 0% 6% 7% 96% 9% Total 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100%

Items highlighted in red indicate that 1 in 5 patients screened reported distress scores of 8 of more. Items highlighted in purple indicate that more than 1 in 10 patients screened reported distress scores of 8 or more.

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

100%

Percentage of distress score category by tumour type

Not recorded

8 or more

Between 4 and 8

Less than 4


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Graph 12 and table 15 provide a picture of distress score categories by screening unit.

Graph 12 Distress score by screening unit: percentage of total screens Table 15 Distress score by screening unit

Screening Unit Less than 4

% Less than 4

Between 4 and 8

% Between 4 and 8

8 or more

% 8 or more

Missing % Missing

Total % Total

Day oncology 97 9.9% 67 6.8% 23 2.3% 1 0.1% 188 19.1% Oncology ward 104 10.6% 84 8.5% 33 3.4% 7 0.7% 228 23.2% Palliative care unit 55 5.6% 69 7.0% 33 3.4% 8 0.8% 165 16.8% Radiation therapy 125 12.7% 61 6.2% 16 1.6% 3 0.3% 205 20.8% Specialist clinic (OP) 65 6.6% 78 7.9% 24 2.4%

0.0% 167 17.0%

Surgical ward 4 0.4% 7 0.7% 1 0.1% 1 0.1% 13 1.3% Other 9 0.9% 6 0.6% 2 0.2% 1 0.1% 18 1.8% Total 459 46.6% 372 37.8% 132 13.4% 21 2.1% 984 100.0%

If we add the distress score categories of ‘between 4 and 8’ and ‘8 or more’, and look at them in relation to the percentage of scores by screening unit, the following picture emerges: Palliative care unit: 62% of 165 people screened identified scores of 4 or more Specialist clinic: 61% of 167 people screened identified scores of 4 or more Oncology ward: 51% of 228 people screened identified scores of 4 or more Day oncology: 48% of 188 people screened identified scores of 4 or more Radiotherapy: 38% of 205 people screened identified scores of 4 or more This is a patient self reported level of distress at a particular time point, however it does show a picture of patients experiencing high levels of distress, particularly while an inpatient on the palliative care unit and when attending specialist clinics. Increasing the awareness by staff that their patients are reporting this level of distress may assist in managing these levels of distress in the early stages, preventing longer term impacts of this for the patient.

0% 2% 4% 6% 8%

10% 12% 14%

Perc

enta

ge o

f tot

al s

cree

ns

Distress score by screening unit % of total screens

n = 984

Less than 4

Between 4 and 8

8 or more

Missing


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6. Problem identified As identified distress scores do not correspond to specific problems recorded, therefore this analysis does not include a comparison of recorded problems and distress scores. Of the 1057 screens completed, 984 (93.1%) completed the problem checklist. There were 7153 problems identified across all problem checklist domains. Analysis of problem checklist data found the following:

• A mean of 7.27 problems

• A median of 6 problems

• A range of 0 to 30 problems

• A Standard deviation of 5.62. Table 16 demonstrates the problems identified by domain and breaks these down by the percentage each problem is identified by domain and by total number of screens. Table 16 All problems identified by domain

Problems Total ticks % of domain % of screens Number of screens 984 PRACTICAL 293 Child care 15 5% 2% Housing 37 13% 4% Insurance/financial 79 27% 8% Transportation 117 40% 12% Work/school 44 15% 4% Treatment decisions 1 0% 0% FAMILY 148 Dealing with children 56 38% 6% Dealing with partner 75 51% 8% Ability to have children 17 11% 2% Family health issues 0 0% EMOTIONAL 2063 Depression 218 11% 22% Fears 313 15% 32% Nervousness 382 19% 39% Sadness 383 19% 39% Worry 511 25% 52% Loss of interest in usual activities 256 12% 26% PHYSICAL 4632 Appearance 126 3% 13% Bathing/dressing 204 4% 21% Breathing 259 6% 26% Changes in urination 182 4% 18% Constipation 262 6% 27% Diarrhoea 119 3% 12% Eating 308 7% 31% Fatigue 525 11% 53% Feeling swollen 197 4% 20% Fevers 86 2% 9% Getting around 309 15% 31% Indigestion 132 6% 13% Memory/concentration 261 13% 27% Mouth sores 110 5% 11% Nausea 213 10% 22% Nose dry/congested 139 7% 14%


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Problems Total ticks % of domain % of screens Pain 405 20% 41% Sexual 39 2% 4% Skin dry/itchy 253 12% 12% Sleep 347 17% 35% Substance abuse 1 0% 0% Tingling in hand/feet 167 8% 17% SPIRITUAL 17 Spiritual concerns 17 2% Total problems identified 7153

Practical domain: Of the 7153 ticks recorded across all problem domains, 293 (4%) were recorded in the practical domain. This domain includes six problems. ‘Transportation’ and ‘insurance/finance’ problems were most commonly identified. Family domain: Of the 7153 ticks recorded across all problem domains, 148 (2%) were recorded in the family domain. This domain includes four problems. The most reported problems were ‘dealing with partner’ and ‘dealing with children’. There were no responses for ‘family health issues’. Emotional domain: Of the 7153 ticks recorded across all problem domains, 2063 (29%) were recorded in the emotional domain. This domain includes 6 problems. Each screen recorded at least 2 problems within this domain. Problems related to’ worry’ were identified by approximately half of the screens and more than a third of screens identified ‘sadness’, ‘nervousness’ and ‘fears’. Physical domain: Of the 7153 ticks recorded across all problem domains, 4632 (65%) were recorded in the physical domain. This domain includes 22 problems. Each screen recorded at least 4 problems within this domain. ‘Fatigue’, ‘pain’, ‘sleep’, and ‘memory/concentration’ problems were most commonly reported


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Graph 13 describes problems recorded on the problem checklist across all domains.

Graph 13 All problems identified: highest to lowest

Practical domain Family domain Emotional domain Physical domain Spiritual domain

0%

10%

20%

30%

40%

50%

60%

Fatig

ue

Wor

ry

Pain

N

ervo

usne

ss

Sadn

ess

Slee

p Fe

ars

Eatin

g G

ettin

g ar

ound

Co

nstip

atio

n M

emor

y /

conc

entr

atio

n Lo

ss o

f int

eres

t in

usu

al …

Br

eath

ing

Dep

ress

ion

Nau

sea

Bath

ing

/ dr

essi

ng

Feel

ing

swol

len

Chan

ges

in u

rina

tion

Ting

ling

in h

and

/ fe

et

Nos

e dr

y /

cong

este

d A

ppea

ranc

e In

dige

stio

n Tr

ansp

orta

tion

Dia

rrho

ea

Skin

dry

/ it

chy

Mou

th s

ores

Fe

vers

In

sura

nce

/ fin

anci

al

Dea

ling

with

par

tner

D

ealin

g w

ith c

hild

ren

Hou

sing

W

ork

/ sc

hool

Se

xual

Ch

ild c

are

Abi

lity

to h

ave

child

ren

Spir

itual

con

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s Tr

eatm

ent

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s Fa

mily

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lth is

sues

Su

bsta

nce

abus

e

Problems identified: highest to lowest n = 984


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Table 17 shows the top individual problems identified. Of the 39 problems listed in the problem checklist, 17 were identified by at least 1 in 5 people, with fatigue and worry identified by more than half of the screens. . All of these top 17 problems were from the emotional and physical domains of the problem checklist. Table 17 Problems identified: highest to lowest (1 in 5 people identify problem)

Problem identified % of screens Fatigue 53% Worry 52% Pain 41% Nervousness 39% Sadness 39% Sleep 35% Fears 32% Eating 31% Getting around 31% Constipation 27% Memory/concentration 27% Loss of interest in usual activities 26% Breathing 26% Depression 22% Nausea 22% Bathing/dressing 21% Feeling swollen 20%

Tables 23 to 31 (Appendix 1) break down the top reported problems by screening unit. There is potential for screening units to use this information to address commonly identified problems. For example, fatigue and pain are identified most often by patients screened on the oncology and palliative care wards. Investigating the causes for these problems may assist in implementing further strategies to minimise their impact.


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7. Screening outcomes After patients complete the screening tool, a conversation with a health professional assists to clarify the patient’s perception of identified problems and address needs through information provision, triage and referral. This conversation is a key component of the screening process recommended by the Victorian Department of Health and Human Services. The following data provides an insight into the outcomes of this discussion at Austin Health. 7.1. Information provided Graph 14 and table 18 provide a picture of the level of information provided to patients following a screen. In total, 788 of the 1057 (75%) screens completed recorded whether information had been provided. Of these, 18% of screens recorded providing written information; distress scores varied amongst these screens. It is difficult to determine if this is an appropriate rate of information provision as there are a number of factors that may have influenced this figure, including:

• Information provision was not always recorded on the supportive care medical record form

• Information may have been offered but declined by the patient

• Information may have been provided prior to the screening event.

Graph 14 Information provided by distress score Table 18 Information provided by distress score

Information provided

Less than 4 Between 4 and 8

8 or more No score recorded

Total

Yes 56 66 21

143 No 260 161 70 9 500 Unable to determine 67 53 17 8 145 Total 383 280 108 17 788

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

100%

Less than 4 n = 383

Between 4 and 8

n = 280

8 or more n = 108

No score recorded

n = 17

Information provided by distress score n = 788

Unable to determine

No

Yes


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7.2. Discussion provided Graph 15 and table 19 provide a picture of the number of discussions that occurred following a screen. Of the 1057 screens completed 788 (75%) recorded that a discussion had occurred following the screen. Of these 80% of people participated in a discussion with a health care professional. To determine why some screens did not show evidence of a discussion, further investigation is required beyond review of supportive care screening medical record forms.

Graph 15 Discussion provided by distress score Table 19 Discussion provided by distress score

Discussion provided Less than 4 n = 383

Between 4 and 8

n = 280

8 or more n = 108

No score recorded

n = 17

Total

Yes 304 226 88 9 627 No 40 24 8 1 73 Unable to determine 39 30 12 7 88 Total 383 280 108 17 788

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

100%

Less than 4 n = 383

Between 4 and 8

n = 280

8 or more n = 108

No score recorded

n = 17

Discussion provided by distress score n = 788

Unable to determine

No

Yes


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7.3. Referrals Table 20 provides details of referral data collected. Of the 1001 referrals that were recorded as offered, 724 (72.3%) were made. Referrals listed here are first tier referrals as a result of the supportive care screen, additional referrals made following assessment by the clinician/service referred to are not recorded. Table 20 Referral status

Hospital Status Number of referrals Austin Hospital Not recorded 2 Austin Hospital Offered and made 724 Austin Hospital Offered but declined 214 Austin Hospital Offered, no status info 57 Austin Hospital Not specified 4 Total 1001

Table 21 provides details of the referrals that were offered and made. The majority of referrals (98%) were made to services provided by Austin Health. Of these, the services most referred to were: social work (24.3%), dietetics (17.7%) and other (10.8%). Only 16 of the 724 (2%) referrals made were made to community services. Of these, only 1 was made to a support group and 1 to Cancer Council Victoria. Data was not collected on why referrals were made to individual services; however given the high number of screens identifying emotional domain problems, the higher number of referrals to social work, pastoral care, psychology, palliative care and counselling (252 referrals or 35%) would be expected. In relation to identified physical domain problems, there were 375 referrals or 52% made to dietetics, GP/Dr, physiotherapy, occupational therapy, nursing, speech pathology, stomal therapist, massage therapy and lymphoedema clinic. Table 21 Referrals made: most often to least often

Health service Community Total Percentage total

Social work 176 176 24.3% Dietetics 128 128 17.7% Other 74 4 78 10.8% GP/ doctor 72 3 75 10.4% Physiotherapy 69 69 9.5% Occupational Therapy 41 41 5.7% Pastoral Care 40 40 5.5% Nursing 39 39 5.4% Psychology 20 20 2.8% Speech pathology 16 16 2.2% Palliative Care 8 3 11 1.5% Look Good Feel Better Program 7 1 8 1.1% Counselling 2 3 5 0.7% Brain Tumour Support Officer 4 4 0.6% Stomal Therapy 3 3 0.4% Wellness Program 3 3 0.4% Massage therapist 2 2 0.3% Sexual Health 2 2 0.3% Cancer Care Nurse (eg BCN) 1 1 0.1% Cancer Council Victoria

1 1 0.1%

Lymphoedema clinic 1 1 0.1% Support Group

1 1 0.1%

Total 708 16 724 100.0%


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Items highlighted in pale red were infrequently referred to (less than 3% of total referrals). Table 22 provides details of referrals that were offered and declined. Of referrals offered but declined, 33.6% were to social work, 11.2% were to pastoral care and 8.9% were to counselling. Reasons for declining these referrals were not recorded so further investigation would be required to understand what variables impact acceptance of referrals to these services. In addition to the relatively low rates of referrals offered to dietetics, occupational therapy, physiotherapy and psychology, some tendency to decline referrals to these services is also noted. At present there is no readily available data source to aid understanding of what screening clinicians tell patients about services/evidence-based interventions to address their identified problems. Table 22 Referrals offered but declined

Row Labels Community Health service

Unspecified Total Percentage total

Social work

72

72 33.6% Other

27 1 28 13.1%

Pastoral Care

24

24 11.2% Counselling 5 11 3 19 8.9% Dietetics

16

16 7.5%

Occupational Therapy

12

12 5.6% Physiotherapy

10

10 4.7%

Psychology

9

9 4.2% Look Good Feel Better Program 1 5

6 2.8%

Nursing 1 4

5 2.3% Cancer Council Victoria 3

3 1.4%

GP/ doctor

3

3 1.4% Unspecified

1 1 2 0.9%

Veteran Affairs

2

2 0.9% Brain Tumour Support Officer

1

1 0.5%

Cancer Care Nurse (eg BCN)

1

1 0.5% Speech pathology

1

1 0.5%

Total 10 199 5 214 100.0%


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8. Discussion

8.1. Methodology • Data was collected for this audit via three different strategies and allowed 1057 of the

supportive care screens undertaken at Austin Health over the 18 month time period to be entered into the database. Due to limited resources, data could not be collected on all screens undertaken with the one patient over the time period, and it is therefore difficult to compare changes in distress score and problems identified over time. It is also difficult to compare newly diagnosed screens with those that were completed with patients who were mid-treatment or at the end of treatment.

8.2. Overview of results

Population:

• Age at which screening occurred at Austin Health broadly reflects the age at which cancer is diagnosed across the state.

• The audit provided a clear picture of where screening occurs within Austin Health and allows some comparison between screening units and tumour type.

Distress score: • Overall, recorded distress scores followed the expected pattern with most people identifying a

score of ‘less than 4’, fewer people identifying a score of ‘between 4 and 8’ and fewer still identifying a score of ‘8 or more’. This pattern was consistent across tumour type and screening unit.

• Overall higher distress scores were recorded when screening occurred in the palliative care unit and specialist clinics. Knowledge that patients attending these services may experience greater distress could assist staff and services to monitor patients and provide interventions or self -management strategies earlier to reduce the impact of this distress.

Problem checklist: • This study demonstrated that there are many (7153) problems identified by cancer patients at

Austin Health. Some problems such as ‘fatigue’ and ‘worry’ were identified in over 50% of screens.

• Variability in problems identified within tumour types reinforces the value of using a problem checklist to assist patients to actively identify their individual needs.

• ‘Worry’, ‘nervousness’, ‘sadness’, and ‘fears’ were the most commonly identified emotional domain problems. Increasing awareness of the high prevalence of these problems and implementing strategies early to assist people to manage the impact of these could assist in the early identification and management of these problems.

• ‘Fatigue’, ‘pain’ and ‘sleep’ remain the most commonly identified physical domain problems. This has been a consistent finding throughout SC screening implementation across tumour types or locations. Problems with ‘fatigue’ and ‘sleep’ can often be addressed in group sessions and through referral to allied health professionals working within community health/rehabilitation centres who specialise in these areas. Opportunities and collaborations should be investigated to support greater understanding of community-based services and strengthened linkages between services. NEMICS is currently undertaking work in this area and should be consulted in relation to this work.

• The Problem Checklist assists people to actively identify problems specific to them from a list of 39 across 5 domains. Additional benefits of the checklist are to educate individuals that these problems are common, it is ‘OK’ to ask for help and there is help available. We need to ensure that after a supportive care screen is completed, a discussion with a skilled health professional takes place and actions/referrals are agreed upon and completed.


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Screening outcomes: • At present screening outcomes are recorded on the supportive care screening medical record

form and the quality of data collected depends on the accuracy of what is recorded.

• The data collected reflects first tier referral data only and does not record further referrals made by the clinician to which the original referral is made.

• The number of referrals made to address problems did not necessarily reflect the number of times a problem was identified.

• Of the 1001 referrals offered to address identified problems only 724 were actually made. The importance of the conversation that accompanies screening cannot be underestimated in assisting the patient to determine how best to address their needs. It is difficult to evaluate whether the type and amount of information and referrals offered are appropriate from the information recorded by clinicians. Further work is required to investigate this issue.

• Knowledge of psychosocial services (health service & community), referral pathways, and the availability of acute and community allied health and psychosocial clinicians to refer to may impact on referrals offered.

9. Recommendations

Methodology: • A large number of supportive care screens were audited providing a snapshot of the supportive

care needs of the cancer population at Austin Health. Ensuring all screens for each patient are entered for the audit time frame could provide an opportunity to compare supportive care screen results over time for individual patients.

Distress score: • Further investigation into causes of distress to provide guidance for strategies to support

patients during this time is required. This audit has identified different rates of self reported distress according to tumour type and unit in which the screening occurs.

Problem Checklist: • This is the first time an audit has been undertaken to identify the supportive care needs of a

large sample of the Austin Health cancer population. It provides a unique opportunity to use these findings to identify the issues patients are experiencing by tumour type and by screening location. This would provide an opportunity for individual services to develop strategies to address commonly reported needs.

• Results from the audit provide an opportunity for Austin Health, in collaboration with other NEMICS region oncology services, to take a region-wide approach to address gaps in service.

• This audit identified the most commonly recorded problems across all domains in the Problem Checklist. Problems within the emotional and physical domain were identified most often. In addition, of patients attending specialist clinics and day oncology, approximately 50% report ‘fatigue’ as a problem. Consideration could be given to interventions to assist patients to manage ‘fatigue’ early in their care.


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Screening outcomes: • Further work is required to determine the best method of capturing more detailed triage and

referral data.

• There is an opportunity to better understand the relationship between reported distress, problems identified, what occurs during the discussion and the actions and referrals taken. Understanding these relationships may assist in planning services to address supportive care needs and to build relationships with cancer NGO’s and community services to best support patient needs.

• This audit focused only on information recorded on the supportive care screening tool medical record form. To capture and understand second tier referrals a more detailed medical record audit is required.

• Further research into the local patient experience of screening to determine whether the subsequent discussion, information provision and referrals made met individual patient needs is recommended.


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10. Appendices 10.1. Appendix 1 Problems identified by screening unit: Table 23 Frequency of problems identified by screening unit: fatigue

Screening unit Frequency of ticks Total screens by screening unit

% of total screens by screening unit

Palliative care unit 128 168 76.2% Day oncology 99 188 52.7% Oncology ward 131 280 46.7% Specialist clinic (OP) 79 173 45.6% Radiation therapy 78 207 37.6% Other 2 6 33% Surgical ward 3 13 23% Not recorded 0 22 0% Total 525

Table 24 Frequency of problems identified by screening unit: worry

Screening Unit Frequency of ticks Total screens by screening unit


Palliative care unit 98 168 58.3% Specialist clinic (OP) 99 173 57.2% Surgical ward 7 13 54% Day oncology 97 188 51.5% Other 3 6 50% Radiation therapy 93 207 45% Oncology ward 114 280 40.8% Not recorded 0 22 0% Total 512

Table 25 Frequency of problems identified by screening unit: pain



Palliative care unit 106 168 63% Day oncology 70 188 37.2% Radiation therapy 73 207 35.3% Oncology ward 92 280 33% Specialist clinic (OP) 55 173 32% Surgical ward 4 13 31% Not recorded 5 22 23% Other 1 6 16.6% Total 406


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Table 26 Frequency of problems identified by screening unit: nervousness Screening unit Frequency of ticks Total screens by

screening unit % of total screens by screening unit

Specialist clinic (OP) 80 173 46.3% Day oncology 83 188 44.1% Surgical ward 5 13 38.4% Palliative care unit 60 168 35.8% Radiation therapy 71 207 34.2% Oncology ward 79 280 28.3% Other 3 6 50% Not recorded 2 22 9% Total 383

Table 27 Frequency of problems identified by screening unit: sadness



Palliative care unit 100 168 60% Specialist clinic (OP) 67 173 39% Oncology ward 93 280 33.3% Radiation therapy 52 207 25.2% Surgical ward 3 13 23% Day oncology 64 188 18% Not recorded 2 22 9% Other 2 6 33% Total 383

Table 28 Frequency of problems identified by screening unit: sleep



Surgical ward 5 13 38.4% Specialist clinic (OP) 61 173 35.2% Day oncology 65 188 35% Palliative care unit 57 168 34% Radiation therapy 66 207 32% Oncology ward 87 280 31% Not recorded 5 22 23% Other 1 6 16.6% Total 347

Table 29 Frequency of problems identified by screening unit: fears



Surgical ward 6 13 46.1% Specialist clinic (OP) 70 176 40% Palliative care unit 62 168 37% Day oncology 55 188 29.2% Oncology ward 69 280 25% Radiation therapy 49 207 23.7% Other 2 6 33% Not recorded 1 22 4.5% Total 314


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Table 30 Frequency of problems identified by screening unit: eating Screening unit Frequency of ticks Total screens by

screening unit % of total screens by screening unit

Palliative care unit 103 168 63% Oncology ward 91 280 32.5% Day oncology 42 188 22.3% Radiation therapy 40 207 19.4% Not recorded 4 22 18.1% Specialist clinic (OP) 26 176 16.5% Other 2 6 33% Surgical ward 0 13 0% Total 308

Table 31 Frequency of problems identified by screening unit: getting around



Palliative care unit 119 168 70.8 Oncology ward 77 280 27.5 Not recorded 5 22 22.8 Radiation therapy 42 207 20.2 Specialist clinic (OP) 36 176 20.4 Day oncology 26 188 13.8 Other 2 6 33 Surgical ward 2 13 13.3 Total 309

supportive care audit 2013 - 2014 · 2016-05-12 · pastoral care, psychology, palliative care and...

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