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

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Dr Hareth Al-Janabi's presentation at Meningitis Research Foundation 2013 conference Meningitis and Septicaemia in Children and Adults

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

  1. 1. 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
  2. 2. – 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
  3. 3. Outline – – – Relevance of family QALYs in economic evaluation “Family impact of meningitis” study Key messages from this research Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  4. 4. Outline – – – Relevance of family QALYs in economic evaluation “Family impact of meningitis” study Key messages from this research Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  5. 5. Economic evaluation using QALYs (quality adjusted life years) Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  6. 6. 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) Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  7. 7. Health ‘externalities’ and total QALYs from meningitis prevention Health (main carer) Health (patient) Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  8. 8. Health ‘externalities’ and total QALYs from meningitis prevention Health (main carer) Health (patient) Health (family member 2,3,4) Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  9. 9. Health ‘externalities’ and total QALYs from meningitis prevention Health (main carer) Health (patient) Health (family member 2,3,4) Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi Total QALYs
  10. 10. 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: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  11. 11. Outline – – – Relevance of family QALYs in economic evaluation “Family impact of meningitis” study Key messages from this research Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  12. 12. ‘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 Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  13. 13. 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    Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  14. 14. 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  Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi Health state is 22213 = 0.205
  15. 15. 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% Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  16. 16. 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 Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  17. 17. Each additional after-effect is bad for the health of the person affected Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  18. 18. ...and bad for the health of family members too Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  19. 19. 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. Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  20. 20. 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. Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  21. 21. Total family impacts Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  22. 22. Estimating the total health ‘multiplier’ 1.48 1.29 Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  23. 23. Outline – – – Relevance of family QALYs in economic evaluation “Family impact of meningitis” study Key messages from this research Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi
  24. 24. 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. Family impact of meningitis: Hareth Al-Janabi Validating the ICECAP-A: Hareth Al-Janabi

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