Participants of how there were activities that they used to do for fun, but which they could no longer do: “I can’t anymore. And I did love dancing... I went to a wedding in September and ...I couldn’t get up and dance. I could have cried my eyes out.” (Female, Retired, A) “You lose interest in, shopping. You know, it just, becomes a grudge.” (Female, retired, C) “You’ve lost the enjoyment?” (Researcher) “That’s right. There’s no browsing anymore,” Because of the presence of pain, often together with tiredness, it seemed that there were days where respondents were ‘in the wrong frame of mind’ to experience enjoyment. Linked to this was the unpredictable nature of pain, and hence a trend of good and bad days. “...if I feel fine up top I’ll have a better day. But if I wake up in the morning and I don’t feel right up here, you know the day is going to be worse” (Male, not employed, B) “When my pain comes on I get short-tempered.” (Male, employed, B) Respect and Identity: Because the presence of pain is not easily visible, other people question whether it is genuine or whether those reporting pain are ‘putting on an act’ or ‘seeking attention’. There were stories of how, when attempting to claim income support or other assistance, ‘officials’ were hostile and challenged the extent to which patients were debilitated by pain. Because of the fear that people do not believe them or are by their pain participants battle to find a balance between being honest and ‘selling the story’ that they are suffering less than they actually are. Other people appear confused by the fact that they are experiencing no improvement. “I always hate when someone says ‘how are you?’ I can’t lie to ‘em, I can’t turn round and say I’m absolutely bloody fine, when I’m not, you know. But you can’t, you can’t turn round and say ah, terrible!” (Male, not employed, B) “When people ask if you’re alright, at some point they want to hear a positive response don’t they, and if they don’t, they don’t know how to deal with it.” (Male, not employed, C)
While incorporating everything that is important to patients into an outcome measure may not be feasible (without generalising ‘attributes’ to a very abstract level), adopting a broader informational base for economic evaluation would be helpful for evaluating across sectors. This work identified a list of capabilities that will be important in evaluating cross-sectoral interventions for those with chronic pain and presents a tool, in the form of the questionnaire, through which this can be done. Next steps will involve assessing the validity of the instrument, through its inclusion alongside and comparison with both established generic and condition-specific instruments. In its current form, it will offer service providers a systematic means of capturing outcomes which extend beyond health symptoms; it will give an indication of whether services enable users to be and do those things which are of value to them. Condition-specific instruments are not typically used in economic evaluation. Whilst eliciting values for this instrument will enhance its use in terms of gathering additional economic evidence to inform policy-makers, a generic capability-instrument which explicitly incorporates health could offer a stand-alone alternative to the QALY. References: Al-Janabi, H., T. Flynn, et al. (2012). "Development of a self-report measure of capability wellbeing for adults: the ICECAP-A." QUALITY OF LIFE RESEARCH 21(1): 167-76. Alkire, S. (2008). Using the capability approach: prospective and evaluative analyses. The Capability Approach: Concepts, Measures and Applications. F. Comin, M. Qizilbash and S. Alkire. New York, Cambridge University Press. Anand, P., G. Hunter, et al. (2005). "Capabilities and Well-Being: Evidence Based on the Sen-Nussbaum Approach to Welfare." Social Indicators Research 74(1): 9-55. Blomqvist, K. and A. Edberg (2002). "Living with persistent pain: experiences of older people receiving home care." Journal of Advanced Nursing 40(3): Borell, L., E. Asaba, et al. (2006). "Exploring experiences of "participation" among individuals living with chronic pain." Scandinavian Journal of Occupational Therapy 13: 76-85.
Table 2: Comparison of Attributes in the Capability-Based Questionnaire for Chronic Pain with Attributes in Existing Capability Measures# Questionnaire for Chronic Pain ICECAP-A ICECAP-O 18 Dimension measure for use in Public Health Love & Social Inclusion Attachment (love, friendship & support) Attachment (love & friendship) Love & support Social networks Enjoyment Enjoyment (enjoyment & pleasure) Enjoyment (enjoyment & pleasure) Enjoy recreation Appreciate nature Respect & Identity Achievement (achievement & progress) - Respect & appreciation Discrimination Freedom of expression Remaining Physically & Mentally Active Employment discrimination Role (doing things which make you feel valued. Imagination & creativity Daily activities Societal & Family Roles - Influence local decisions Independence & Autonomy Autonomy (being independent) Control (independence) Planning one’s life Suitable accommodation Physical & Mental Well-Being - - Life expectancy Losing sleep Feeling Secure About the Future Stability (feeling settled & secure) Security (thinking the future without concern) Property ownership Neighbourhood safety Potential for assault # Loose mapping between instruments for illustration only. This is unlikely to reflect the true complexity. The use of ‘-‘ indicates that there is no attribute on this questionnaire which obviously corresponds to the attribute on the other questionnaire(s).