1. Using the ICECAP indices to measure capability wellbeing in the UK Joanna Coast Rome, May 2012

2. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Outline  Context & challenges in using capability for economic evaluation  The ICECAP indices  Use of the ICECAP indices –To assess deprivation –To assess intervention/policy change  Further research

3. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Context & challenges in using capability for economic evaluation

4. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The context  Decision making across health & other sectors in the UK  Method required that is individual-based (for use in clinical trials/decision analysis)  Current approach: QALY maximisation –Focus only on health problematic particularly in some areas  Public health  Social care  End of life care

5. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The challenge  Deliberately underspecified nature of the capability approach (Sen, 1993) –‘Quite different specific theories of value may be consistent with the capability approach, and share the common feature of selecting value-objects from functionings and capabilities. Further, the capability approach can be used with different methods of determining relative weights and different mechanisms for actual evaluation.’ (Sen, 1993) (p. 48).  ‘Too vague to be of use?’ (Sugden, 1993)

6. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The measurement challenge  Capabilities or functionings?  Participatory methods?  Truly ‘objective’ or perceived capabilities?  Inclusion of ‘capabilities’ that influence other ‘capabilities’ –E.g. health

7. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The valuation challenge  Sen rejects use of (individual’s) choices or desires to value capabilities – concern with adaptation  Other options –Deliberation & debate –Value judgements elicited from population as ‘evidence’ for values (‘Cookson’s compromise’)  Anchoring of values  Anchoring considered important in health economics literature so as to be able to think about both length & quality of life

8. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The ICECAP indices

9. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The measurement challenge: ICECAP  Capabilities or functionings?  Participatory methods? –Used extensively – in-depth qualitative methods to determine capabilities  Truly ‘objective’ or perceived capabilities?  Inclusion of ‘capabilities’ that influence other ‘capabilities’ –Aimed to identify those ‘end-point’ capabilities that are fundamentally important to people

10. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap The valuation challenge: ICECAP  Sen rejects use of (individual’s) choices or desires to value capabilities – concern with adaptation  Other options –Deliberation & debate –Value judgements elicited from population as ‘evidence’ for values (‘Cookson’s compromise’)  Anchoring of values  Anchor on ‘full capability’ and ‘no capability’: those who have died have no capability on any attribute

11. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP development – all versions  Phase 1: in-depth interviews to generate conceptual attributes for measures, analysed using constant comparative methods  Phase 2: semi-structured interviews to check attributes and develop meaningful wording for measures  Phase 3: valuation using best-worst scaling amongst general population  Phase 4: assessment of feasibility, validity, reliability, sensitivity to change

12. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP

13. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP

14. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP  ICECAP-O –Older people  ICECAP-A –Adult population  ICECAP-SCM –End of life

15. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap 5 questions, each with 4 response categories. 1024 possible ‘capability wellbeing’ states. ICECAP-O

16. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP-O index values  No capability on all attributes: value 0  A little capability on all attributes: value 0.556  A lot of capability on all attributes: value 0.868  Full capability on all attributes: value 1

17. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Similar format. Aims to tap into some domains of importance to general adult population not captured in ICECAP-O. ICECAP-A

18. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Preliminary values  No capability on all attributes: value 0  A little capability on all attributes: value 0.43  A lot of capability on all attributes: value 0.86  Full capability on all attributes: value 1

19. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP-SCM  1) Having a say (Your ability to influence where you would like to live or be cared for, the kind of treatment you receive, the people who care for you)  2) Being with people who care about you (Being with family, friends or caring professionals  3) Physical suffering (Experiencing pain or physical discomfort which interferes with your daily activities)  4) Emotional suffering (Experiencing worry or distress, feeling like a burden)  5) Dignity (Being yourself, being clean, having privacy, being treated with respect, being spoken to with respect, having your religious or spiritual beliefs respected)  6) Being supported (Having help and support)  7) Being prepared (Having financial affairs in order, having your funeral planned, saying goodbye to family and friends, resolving things that are important to you, having treatment preferences in writing or making a living will)

20. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Use of the ICECAP indices

21. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Included in more than 40 studies

22. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Assessing deprivation with ICECAP

23. Division of Primary Health Care Bristol Research Network presentation 2008

24. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Mean ICECAP-O scores: older Bristolians Male0.837General health good0.882 Female0.826GH fairly good0.835 Age 65-740.838GH not good0.725 Age 75+0.819 White0.832Live alone0.809 BME0.808Live with others0.842 Have a faith0.836Dental care: NHS0.828 No faith0.803Dental care: private0.869 Not carer0.836Dental care: none0.798 Carer0.800 Receive benefits0.777Have qualification0.855 Do not receive benefits0.844Not have qualification0.817 Benefits N/A0.851

25. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP-O multi-variable regression  Explaining capability wellbeing as measured by ICECAP  Significant relationships (10%) in final model –‘Do not have a faith’ (<0.001) –Live alone (0.01) –Meeting friends/family daily (0.01) –Perceived influence on local decision making (0.04) –Feeling safe (indoors after dark) (0.001) –Dental care (0.06) –General health (<0.001) –Housebound for any reason (<0.001) –Disabled (0.01) –Sleep quality (0.001)

26. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Associations ICECAP-A and health

27. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Assessing intervention/policy change with ICECAP

28. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score0.0700.0160.0380.102 Change in individual index values (on 0-1 scale) Attachment-0.0100.006-0.0220.002 Security0.0210.007 0.035 Role0.0170.0050.0080.027 Enjoyment0.0200.0050.0110.029 Control0.0210.0050.0120.031

29. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score0.0700.0160.0380.102 Change in individual index values (on 0-1 scale) Attachment-0.0100.006-0.0220.002 Security0.0210.007 0.035 Role0.0170.0050.0080.027 Enjoyment0.0200.0050.0110.029 Control0.0210.0050.0120.031

30. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score0.0700.0160.0380.102 Change in individual index values (on 0-1 scale) Attachment-0.0100.006-0.0220.002 Security0.0210.007 0.035 Role0.0170.0050.0080.027 Enjoyment0.0200.0050.0110.029 Control0.0210.0050.0120.031

31. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Further research

32. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap  Finalise & publish ICECAP-A values  Finalise descriptive system for ICECAP-SCM & generate values  Assessments of validity & reliability for all measures  Work on use of measures in studies of efficiency & equity  Wealth of qualitative data – better understanding of issues such as agency & adaptation

33. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap ICECAP measures  Freely available (subject to registration): –Downloadable forms at: www.birmingham.ac.uk/icecapwww.birmingham.ac.uk/icecap –Index values –Some translations available.  Emerging evidence of validity: –In general population samples –In specific clinical areas.  Endorsement from SCIE; interest from other reimbursement agencies UK and Netherlands

34. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Acknowledgements  MRC funding to fully develop ICECAP-O, ICECAP-A and early development for ICECAP-SCM  Large programme of European Research Council funding for continued work on ICECAP-SCM  All collaborators, in particular: Hareth Al-Janabi, Terry Flynn, Phil Kinghorn, Rosanna Orlando, Eileen Sutton,

35. ICECAP indices: Rome, May 2012 www.birmingham.ac.uk/icecap Key references  Grewal I, Lewis J, Flynn T, Brown J, Bond, J, Coast J. Developing attributes for a generic quality of life measure for older people: preferences or capabilities? Social Science and Medicine. 2006;62(8):1891-1901.  Coast J, Flynn TN, Natarajan L, Sproston K, Lewis J, Louviere JJ, Peters TJ. Valuing the ICECAP capability index for older people. Social Science & Medicine. 2008;67:874-882  Coast J, Peters TJ, Natarajan L, Sproston K, Flynn TN. An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people. Quality of Life Research. 2008;17;967-976  Flynn TN, Chan P, Coast J, Peters TJ. Assessing quality of life among British older people using the ICECAP-O capability measure. Applied Health Economics and Health Policy. 2011;9(5):317-329.  Makai P, Brouwer WB, Koopmanschap MA, Nieboer AP. Capabilities and quality of life in Dutch psycho-geriatric nursing homes: an exploratory study using a proxy version of the ICECAP-O. Quality of Life Research 2012;21(5):801-12.  Al-Janabi H, Flynn T, Coast J. Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research. 2012; 21:167 – 176.