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Family impact of meningitis and septicaemia
1. Hareth Al-Janabi, University of Birmingham
Meningitis Research Foundation Symposium, July 2013
Family impact of meningitis
and septicaemia
2. 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
3. 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
4. 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
5. 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.
6. 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.htm
l
7. 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
8. Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi
Meningitis case study
Nature of meningitis
Chance element
Vaccination for Men B
9. 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?
10. 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
11. 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
12. 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
13. 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
14. 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
17. 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
18. 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%
19. 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)
20. 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.
21. 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.
22. 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
23. 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.
24. 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
Notas del editor
READ Happy for interruptions and questions
READ Happy for interruptions and questions
1. As a precusor to econ eval work in this area – we examined HEX from meningitis 2. contagious and deadly illness – strikes children/babies – often described as parents biggest fear. Vaccines for some strains. Mortality rate. Many survivors live with psych/phys problems eg… Impact of these on family/network. 3. Why this area. Honest - chance. Case study- interesting from a scientific POV: parents, range of after-effects 4. From a policy perspective – Bexsero vaccination for main remaining cause of men – meningo Gp B just been approved by the EM agency and Uk and other countries due to make funding decision this year.
1) Following focus group & formal pilot.....READ....In May 2012 iii) Key reasons – PA, not close to someone with men, bereaved...excluded if possible before posting, but if not after not excluded at this stage if person had made a full recovery – nice control group 2) i)READ inc detailed Q on after-effects ii) time, role, experiences iii) Often parent, could be spouse, sibling, grandparent any self-defining person close to PA…+ various measures, socio-demographic, contextual data
DESCRITPIVE STUFF Top – 3417 packs mailed out
...following two reminders, we heard back from 37% of the households (most of whom eligible) ... 69% sent back one questionnaire and 31% generated two (not necessarily from same household) Total of 1600 NM – PA dyads.
Characteristics… … for PA mostly children and young adults (although a couple in 80s) … mostly pretty good health .., average of 12 years since infection … For NM mostly female, somewhat older, and in better health state (but not much!) … context mostly child-parent dyads (although smaller numbers of lots of other relats), mostly living together (but substantial minority not), only 1/6 NMs described themselves as carers
… but what about confounding? Tried to control for possible external influences (i) S-D, e.g. age/sex/educ that may influence both (ii) time since diag (iii) common genes (iv) common environment We also allowed for (i) clustering – i.e. two response for PA health (ii) explored functional forms for IVs and investigated potential MS of reg mod (iii) carried out a number of robustness/validity checks – go into a bit more detail if interested.
… but what about confounding? Tried to control for possible external influences (i) S-D, e.g. age/sex/educ that may influence both (ii) time since diag (iii) common genes (iv) common environment We also allowed for (i) clustering – i.e. two response for PA health (ii) explored functional forms for IVs and investigated potential MS of reg mod (iii) carried out a number of robustness/validity checks – go into a bit more detail if interested.
… but what about confounding? Tried to control for possible external influences (i) S-D, e.g. age/sex/educ that may influence both (ii) time since diag (iii) common genes (iv) common environment We also allowed for (i) clustering – i.e. two response for PA health (ii) explored functional forms for IVs and investigated potential MS of reg mod (iii) carried out a number of robustness/validity checks – go into a bit more detail if interested.
READ Happy for interruptions and questions
Applied messages for CEA/hpolicy in Men – bad for MH, 17%, …depending on assumption about additional Method messages about HEX for econ eval in general – carers/non-carers, beyond closest, decay
Just to finish – acknowledge the contributions of the orgs and people who have also played a big part in this research