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Developing a Capability-Based Questionnaire for Assessing Well-Being in Patients with Chronic Pain

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Abstract

This paper reports a qualitative study which sought to operationalise Sen’s capability approach in the context of chronic pain. The resulting capability-instrument will allow treatments and services to be evaluated according to whether they enable users to achieve those things which they value in life. This is particularly important in chronic conditions, where the emphasis is often on helping the patient to live their life as fully as possible despite persistent symptoms. Participatory methods were used to identify a list of capabilities deemed important to those with chronic pain. Respondents were recruited through a Pain Management Clinic in the East of England (n = 16). Focus groups were followed-up by individual interviews (n = 6). The following eight capabilities were identified as being important: Love and social inclusion; Enjoyment; Respect and Identity; Remaining physically and mentally active; Independence and autonomy; Societal and family roles; Physical and mental well-being; Feeling secure about the future. These have been developed into a questionnaire for self-completion by service users. The impact of chronic pain on well-being extends well beyond health symptoms and the range of health functionings typically considered when evaluating services. The capability-instrument is intended to supplement current evidence by assessing what service users are enabled to do. In its current form it will also be a useful tool for those seeking to deliver patient-centred care. Additional research into valuation and a decision-rule will progress capability as a stand-alone alternative economic framework.

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Notes

  1. ICEpop CAPability measure for older people.

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Acknowledgments

Funding was received from the Pain Management Clinic at the James Paget University NHS Hospital and from a University of East Anglia studentship. As well as the patients and staff at the clinic, we would like to thank members of the Service User Group, convened by the Aberdeen Pain Research Collaboration.

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Authors and Affiliations

  1. Health Economics Unit, School of Health and Population Sciences, University of Birmingham, Birmingham, B15 2TT, UK

    Philip Kinghorn

  2. Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, UK

    Angela Robinson

  3. Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK

    Richard D. Smith

Authors
  1. Philip Kinghorn
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  2. Angela Robinson
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  3. Richard D. Smith
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Corresponding author

Correspondence to Philip Kinghorn.

Appendix: A Capability-Based Questionnaire for Assessing Well-Being in Patients with Chronic Pain

Appendix: A Capability-Based Questionnaire for Assessing Well-Being in Patients with Chronic Pain

  1. 1.

    Being loved and having friendship.

    • I am able to have a lot of love and contact with friends or family

    • I am able to have quite a lot of love and contact with friends or family

    • I am able to have little love and contact with friends or family

    • I am not able to have any love or contact with friends or family

  2. 2.

    Being able to do things for fun (Including being in the ‘right frame of mind’ to experience enjoyment in life).

    • I am able to get a lot of enjoyment in life

    • I am able to get quite a lot of enjoyment in life

    • I am able to get little enjoyment in life

    • I am not able to get any enjoyment in life

  3. 3.

    Being open, honest, believed, respected and understood (Not being defined as a person with ill health).

    • I am able to feel totally respected and positive about who I am

    • I am able to feel largely respected and positive about who I am

    • I am able to feel somewhat respected and positive about who I am

    • I am not able to feel respected or positive about who I am

  4. 4.

    Doing things which are productive and interesting (for example, hobbies, work or sport).

    • I am able to be totally active (both body and mind)

    • I am able to be largely active (both body and mind)

    • I am able to be somewhat active (both body and mind)

    • I am not able to be active (both body and mind)

  5. 5.

    Being independent and being able to make decisions.

    • I am able to be as independent as I want to be

    • I am able to be almost as independent as I want to be

    • I am able to be much less independent than I want to be

    • I am not be able to be independent

  6. 6.

    The impact that I have on the lives of others (including: partners, family, colleagues and my local community).

    • I am able to contribute to the well-being and happiness of those closest to me, in many ways

    • I am able to contribute to the well-being and happiness of those closest to me, in some ways

    • I am able to contribute to the well-being and happiness of those closest to me, in few ways

    • I am not at all able to contribute to the well-being and happiness of those closest to me

  7. 7.

    My health and mental well-being (including: pain, depression, sleep, mobility, medication side-effects).

    • I have no problems with my physical health or mental well-being

    • I have minor problems with my physical health or mental well-being

    • I have moderate problems with my physical health or mental well-being

    • I have severe problems with my physical health or mental well-being

  8. 8.

    Knowing that in the future I will be able to cope

    • When I think about the future I am able to feel completely confident that I will cope

    • When I think about the future I am able to feel largely confident that I will cope

    • When I think about the future I am able to have little confidence that I will cope

    • When I think about the future I am not able to have any confidence that I will cope

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Kinghorn, P., Robinson, A. & Smith, R.D. Developing a Capability-Based Questionnaire for Assessing Well-Being in Patients with Chronic Pain. Soc Indic Res 120, 897–916 (2015). https://doi.org/10.1007/s11205-014-0625-7

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