family impact of meningitis and septicaemia

Hareth Al-Janabi, University of Birmingham

Meningitis Research Foundation Symposium, July 2013

Family impact of meningitis and septicaemia

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Overview Health externalities Case study 1: Meningitis Case study 2: Parkinson’s (Very early) results Discussion

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Treatments are funded if they are good value-for-money

Value = health benefits

Money = costs

Vs.

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

People live inter-connected lives

Individuals affect others in social network.

Does health spread?

Possible mechanisms.

http://connectedthebook.com/index.html

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Meningitis case study

Nature of meningitis Chance element Vaccination for Men B

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Research questions

Do the after-effects of meningitis affect family members’ health?

What is the impact of different types of after-effect?

Which groups are affected?

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

‘Family impact of meningitis’ survey

Posted to 3417 members of the MRF:– Likely to be network members of PA– Two questionnaire packs per member– Few exclusions

Questionnaire focused on:– Health of PA– The caring situation (if applicable)– Health of the NM

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Measuring ‘health-related quality of life’Mobility I have no problems in walking about I have some problems in walking about I am confined to bed Self-Care I have no problems with self-care I have some problems washing or dressing myself I am unable to wash or dress myself Usual Activities I have no problems with performing my usual activities I have some problems with performing my usual activities I am unable to perform my usual activities Pain/Discomfort I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort Anxiety/Depression I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Measuring ‘health-related quality of life’Mobility I have no problems in walking about I have some problems in walking about I am confined to bed Self-Care I have no problems with self-care I have some problems washing or dressing myself I am unable to wash or dress myself Usual Activities I have no problems with performing my usual activities I have some problems with performing my usual activities I am unable to perform my usual activities Pain/Discomfort I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort Anxiety/Depression I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed

X

X

X

X

X

Health state is 22213= 0.205

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Sample

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Sample

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Who responded?

Network member:– female (%): 76– age (mean): 51– Parent(%): 76– co-resident (%): 61– informal care (%): 16– health status (mean): 0.88

Person affected:– time since initial infection (mean): 12 years– age (mean): 23 (IQR: 12-30)– health status (mean): 0.84

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

About two-thirds reported after effects

Behavioural problems 28%

Mild / moderate learning difficulties 16%

Severe learning difficulties 4%

Speech/language 11%

Bilateral hearing loss 8%Unilateral hearing loss 9%

Sight loss 5%

Other visual impairment 6% Seizures/fit 6%

hydrocephalus 2%

Hypotonia 6%

Motor deficits 4% Incontinence 5%

Balance 13%

Kidney damage 2%

Scarring/tissue damage 15%

Abnormal bone growth 5%

Joint pain 8%

Amputations 4%

Pain (after medication) 7%

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Family impact findings summary

Family members of people with after-effects have:– Worse overall health– Higher levels of depression/anxiety.

Additional after-effects erode the health of both people affected and family members.

Certain after-effects are particularly bad for family members’ health (learning disability, behavioural problems, pain, seizures and hypotonia).

Partners’ health is affected more than parents’ health.

NOTE: WORK-IN-PROGRESS, PLEASE CONTACT HARETH FOR DETAILS (h.aljanabi@bham.ac.uk)

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Caring can be physically and emotionally draining

Caring for him is pleasant but often exhausting.

I work full time, so I find caring very tiring and stressful.

It changed my life. I worry so much that my daughter could get it again. I get very anxious when she gets ill.

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Having a loved one in poor health can affect moods, attitudes and behaviour

Carefree life ...no longer available ...worry, stress, anxiety and isolation.

The impact of the illness on my life was devastating. We all have anxiety and her moods can be very volatile.

[I] mistrust doctors.

It has affected our lives massively. We were a very active couple, running and walking a lot. This no longer happens.

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

– Outline Why this study is important Meningitis case study “Family impact of meningitis” survey Survey findings Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Key messages

Meningitis affects family members’ health too.

Preventing (and treating) meningitis is likely to generate health gains for family.

These impacts should be taken account of in value-for-money assessments and funding decisions.

Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi

Acknowledgements

FUNDER: (UK) Medical Research Council

SUPERVISOR: Jo Coast

COLLABORATORS:

Meningitis Research Foundation (especially participants, Laurie Hannigan, Shirley Gieron, Linda Glennie, volunteers)

Erasmus University (Job Van Exel, Werner Brouwer)

University of Bristol (Caroline Trotter)

OTHERS: Cam Donaldson, Andrea Manca