new studies of qaly loss in patients and carers: family impact of meningitis and septicaemia

Hareth Al-Janabi, University of Birmingham

Meningitis Research Foundation Conference, November 2013

QALY loss in patients and carers - family impact of

meningitis and septicaemia

Acknowledgements: (UK) Medical Research Council, Meningitis Research Foundation members, volunteers and staff, Jo Coast, Job Van Exel, Werner Brouwer, Caroline Trotter, Linda Glennie, Shirley Gieron and Laurie Hannigan.

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: 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-JanabiFamily impact of meningitis: Hareth Al-Janabi

Outline

– Relevance of family QALYs in economic evaluation– “Family impact of meningitis” study– Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Outline

– Relevance of family QALYs in economic evaluation– “Family impact of meningitis” study– Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Economic evaluation using QALYs (quality adjusted life years)

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Measuring QALY changes

– Total QALY change comprises: Impacts on QoL and survival and ...impacts on patients and anyone else effected

– Family QALYs important to capture to minimise bias.

– Family QALYs recommended in prominent guidelines:

"to calculate the total health effect of an intervention, analysts sum all QALYs" (Gold et al, 1996)

“...all direct health effects, whether for patients or, when relevant, carers” (NICE, 2013)

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Health ‘externalities’ and total QALYs from meningitis prevention

Health (main carer)

Health (patient)

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Health ‘externalities’ and total QALYs from meningitis prevention

Health (family member 2,3,4)

Health (main carer)

Health (patient)

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Health ‘externalities’ and total QALYs from meningitis prevention

Health (family member 2,3,4)

Health (main carer)

Health (patient) Total QALYs

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Research questions

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

What is the total additional impact on family health?

Al-Janabi H, Van Exel J, Brouwer W, Trotter C, Glennie L, Hannigan L, Coast J. Is meningitis associated with adverse health outcomes for survivors’ family network? (under review)

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Outline

– Relevance of family QALYs in economic evaluation– “Family impact of meningitis” study– Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: 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-JanabiFamily impact of meningitis: 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-JanabiFamily impact of meningitis: 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-JanabiFamily impact of meningitis: Hareth Al-Janabi

Survey response

Total responses: 1600 (for 1226 PA)

Family members mostly (76%) females and mostly (76%) parents– Few (16%) see themselves as carers.– Mean EQ-5D-5L: 0.88

Person affected – 12 years post-infection (average)– Mean EQ-5D-5L: 0.84– At least one after-effect (67%):

More common: Behaviour – 28%; Mild/mod learning difficulties – 16%; Scarring – 15%

Less common: Incontinence 5%, sight loss 5%, amputation 4%

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Impact of after-effects on health outcomes for survivors and family

SAMPLESAfter effects (n=1063) No after-effects (n=519)

Surv EQ-5D (mean) 0.78*** 0.97

Surv P(mobility problems) 24%*** 1%

Surv P(pain) 38%*** 4%

Surv P(anx/dep) 46%*** 9%

Fam EQ-5D (mean) 0.87*** 0.91

Fam P(mobility problems) 14% 13%

Fam (pain) 32%* 27%

Fam P(anx/dep) 40%*** 23%

* p<0.05, ** p<0.01, *** p<0.001

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Each additional after-effect is bad for the health of the person affected

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

...and bad for the health of family members too

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Providing informal care may harm health

Caring for him is pleasant but often exhausting.

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

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Moods, attitudes and behaviours may change

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-JanabiFamily impact of meningitis: Hareth Al-Janabi

Total family impacts

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Estimating the total health ‘multiplier’

1.29

1.48

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Outline

– Relevance of family QALYs in economic evaluation– “Family impact of meningitis” study– Key messages from this research

Validating the ICECAP-A: Hareth Al-JanabiFamily impact of meningitis: Hareth Al-Janabi

Key messages

Meningitis affects family members’ health.

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

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