Family impact of meningitis and septicaemia
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Dr Hareth Al-Janabi
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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
- 15. Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi Sample
- 16. Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi Sample
- 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 do 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