new studies of qaly loss in patients and carers: family impact of meningitis and septicaemia
DESCRIPTION
Dr Hareth Al-Janabi's presentation at Meningitis Research Foundation 2013 conference Meningitis and Septicaemia in Children and AdultsTRANSCRIPT
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.