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

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May Context & challenges in using capability for economic evaluation

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May 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)

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

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May The ICECAP indices

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May ICECAP

ICECAP indices: Rome, May ICECAP

ICECAP indices: Rome, May ICECAP  ICECAP-O –Older people  ICECAP-A –Adult population  ICECAP-SCM –End of life

ICECAP indices: Rome, May questions, each with 4 response categories possible ‘capability wellbeing’ states. ICECAP-O

ICECAP indices: Rome, May ICECAP-O index values  No capability on all attributes: value 0  A little capability on all attributes: value  A lot of capability on all attributes: value  Full capability on all attributes: value 1

ICECAP indices: Rome, May Similar format. Aims to tap into some domains of importance to general adult population not captured in ICECAP-O. ICECAP-A

ICECAP indices: Rome, May 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

ICECAP indices: Rome, May 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)

ICECAP indices: Rome, May Use of the ICECAP indices

ICECAP indices: Rome, May Included in more than 40 studies

ICECAP indices: Rome, May Assessing deprivation with ICECAP

Division of Primary Health Care Bristol Research Network presentation 2008

ICECAP indices: Rome, May Mean ICECAP-O scores: older Bristolians Male0.837General health good0.882 Female0.826GH fairly good0.835 Age GH not good0.725 Age 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

ICECAP indices: Rome, May 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)

ICECAP indices: Rome, May Associations ICECAP-A and health

ICECAP indices: Rome, May Assessing intervention/policy change with ICECAP

ICECAP indices: Rome, May Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score Change in individual index values (on 0-1 scale) Attachment Security Role Enjoyment Control

ICECAP indices: Rome, May Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score Change in individual index values (on 0-1 scale) Attachment Security Role Enjoyment Control

ICECAP indices: Rome, May Change following treatment (n=56) CoefficientseLowerUpper ICECAP-O score Change in individual index values (on 0-1 scale) Attachment Security Role Enjoyment Control

ICECAP indices: Rome, May Further research

ICECAP indices: Rome, May  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

ICECAP indices: Rome, May ICECAP measures  Freely available (subject to registration): –Downloadable forms at: –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

ICECAP indices: Rome, May 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,

ICECAP indices: Rome, May 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):  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:  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;  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):  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):  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.