Family impact of meningitis and septicaemia

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Dr Hareth Al-Janabi

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  • 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
  • Family impact of meningitis and septicaemia

    1. 1. Hareth Al-Janabi, University of Birmingham Meningitis Research Foundation Symposium, July 2013 Family impact of meningitis and septicaemia
    2. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 15. Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi Sample
    16. 16. Validating the ICECAP-A: Hareth Al-JanabiHealth externalities: Hareth Al-Janabi Sample
    17. 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. 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. 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. 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. 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. 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. 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. 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

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