New studies of QALY loss in patients and carers: family impact of meningitis and septicaemia

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.

Hareth Al-Janabi, University of Birmingham
Meningitis Research Foundation Conference, November 2013

–

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

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

Outline
–
–
–

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


Economic evaluation using QALYs
(quality adjusted life years)


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)


Health ‘externalities’ and total QALYs
from meningitis prevention
Health (main
carer)
Health (patient)


Health (main
carer)
Health (patient)

Health (family
member 2,3,4)

Health (main
carer)
Health (patient)

Health (family
member 2,3,4)

Total
QALYs

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)


‘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


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






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



X


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


X



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



X


Pain/Discomfort
I have no pain or discomfort
I have moderate pain or discomfort
I have extreme pain or discomfort


X



Anxiety/Depression
I am not anxious or depressed
I am moderately anxious or depressed
I am extremely anxious or depressed



X



Health state
is 22213
= 0.205

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%


Impact of after-effects on health
outcomes for survivors and family
SAMPLES
Surv EQ-5D (mean)

After effects (n=1063) No after-effects (n=519)
0.78***
0.97

Surv P(mobility problems)
Surv P(pain)
Surv P(anx/dep)

24%***
38%***
46%***

1%
4%
9%

Fam EQ-5D (mean)

0.87***

0.91

Fam P(mobility problems)
Fam (pain)
Fam P(anx/dep)

14%
32%*
40%***

13%
27%
23%

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

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


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


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.


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.


Total family impacts


Estimating the total health ‘multiplier’
1.48
1.29


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 valuefor-money assessments and funding decisions.


New studies of QALY loss in patients and carers: family impact of meningitis and septicaemia

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