IDEAS home Printed from https://ideas.repec.org/a/plo/pone00/0236584.html
   My bibliography  Save this article

Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals

Author

Listed:
  • Philip Kinghorn
  • Nafsika Afentou

Abstract

Background: The ICECAP capability measures are increasingly being used to capture the impact of health and social care interventions on well-being. In cases where the recipient of an intervention is highly vulnerable, proxy completion may be necessary. This study adds to the limited existing evidence on proxy completion of ICECAP-A specifically and adopts the novel approach of investigating multiple proxy responses for the same four (hypothetical) individuals. Methods: 62 members of the public who were participating in a series of one day deliberative workshops on public health and social care completed ICECAP-A on behalf of four hypothetical individuals, described in vignettes. Quantitative analysis explored the range of proxy responses for each of the four hypothetical individuals, and any possible correlation between participants’ own characteristics and their proxy responses. Participants discussed their proxy responses after completing the task; this discussion was audio recorded and analysed using Framework Analysis. Results: Wide variation in ICECAP-A scores was observed across proxy respondents for each hypothetical individual. Participants’ demographic characteristics and own well-being do not appear to have systematically influenced proxy responses. Qualitative analysis suggests two principal approaches (or perspectives) were adopted by participants: Empathetic (adopting the perspective of the ‘subject’) and factual (a factual assessment of the subject’s well-being). Participants also drew on their own experiences to varying degrees. There were differing interpretations of the Independence attribute on ICECAP-A and some evidence that participants’ ideas of what constituted achievement were context (including life-stage and condition/health) specific. Conclusions: The factual versus empathetic approaches identified from qualitative analysis in this study match to the concept of a proxy-proxy versus proxy-patient perspective, previously outlined in the literature. Researchers should consider specifying which perspective proxy raters should adopt. Findings also suggest proxy responses can be influenced by external points of reference and interpretation of measure attributes.

Suggested Citation

  • Philip Kinghorn & Nafsika Afentou, 2020. "Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals," PLOS ONE, Public Library of Science, vol. 15(7), pages 1-14, July.
    • Handle: RePEc:plo:pone00:0236584
    DOI: 10.1371/journal.pone.0236584
    as

    Download full text from publisher

    File URL: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0236584
    Download Restriction: no
    File URL: https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0236584&type=printable
    Download Restriction: no
    File URL: https://libkey.io/10.1371/journal.pone.0236584?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Donna Rowen & John Brazier & Aki Tsuchiya & Tracey Young & Rachel Ibbotson, 2012. "It’s All in the Name, or Is It? The Impact of Labeling on Health State Values," Medical Decision Making, , vol. 32(1), pages 31-40, January.
    2. Al-Janabi, Hareth & Keeley, Thomas & Mitchell, Paul & Coast, Joanna, 2013. "Can capabilities be self-reported? A think aloud study," Social Science & Medicine, Elsevier, vol. 87(C), pages 116-122.
    3. Kinghorn, Philip, 2019. "Using deliberative methods to establish a sufficient state of capability well-being for use in decision-making in the contexts of public health and social care," Social Science & Medicine, Elsevier, vol. 240(C).
    4. Terry N. Flynn & Elisabeth Huynh & Tim J. Peters & Hareth Al‐Janabi & Sam Clemens & Alison Moody & Joanna Coast, 2015. "Scoring the Icecap‐a Capability Instrument. Estimation of a UK General Population Tariff," Health Economics, John Wiley & Sons, Ltd., vol. 24(3), pages 258-269, March.
    5. Grewal, Ini & Lewis, Jane & Flynn, Terry & Brown, Jackie & Bond, John & Coast, Joanna, 2006. "Developing attributes for a generic quality of life measure for older people: Preferences or capabilities?," Social Science & Medicine, Elsevier, vol. 62(8), pages 1891-1901, April.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Paul Mark Mitchell & Samantha Husbands & Sarah Byford & Philip Kinghorn & Cara Bailey & Tim J. Peters & Joanna Coast, 2021. "Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions," Health Economics, John Wiley & Sons, Ltd., vol. 30(9), pages 1990-2003, September.
    2. Joanna Coast, 2019. "Assessing capability in economic evaluation: a life course approach?," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(6), pages 779-784, August.
    3. Kinghorn, Philip, 2019. "Using deliberative methods to establish a sufficient state of capability well-being for use in decision-making in the contexts of public health and social care," Social Science & Medicine, Elsevier, vol. 240(C).
    4. Engel, Lidia & Bryan, Stirling & Noonan, Vanessa K. & Whitehurst, David G.T., 2018. "Using path analysis to investigate the relationships between standardized instruments that measure health-related quality of life, capability wellbeing and subjective wellbeing: An application in the ," Social Science & Medicine, Elsevier, vol. 213(C), pages 154-164.
    5. Mitchell, Paul Mark & Roberts, Tracy E. & Barton, Pelham M. & Coast, Joanna, 2015. "Assessing sufficient capability: A new approach to economic evaluation," Social Science & Medicine, Elsevier, vol. 139(C), pages 71-79.
    6. León Tamayo, Dorian Fernando, 2016. "Enfoque de capacidades en Amartya Sen: Aproximaciones y reflexiones [Capabilities approach in Amartya Sen: Approaches and reflections]," MPRA Paper 120324, University Library of Munich, Germany, revised 03 Dec 2016.
    7. Cassandra Mah & Vanessa K. Noonan & Stirling Bryan & David G. T. Whitehurst, 2021. "Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(2), pages 223-240, March.
    8. Sebastian Himmler & Job Exel & Werner Brouwer, 2020. "Estimating the monetary value of health and capability well-being applying the well-being valuation approach," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(8), pages 1235-1244, November.
    9. Myles-Jay Linton & Paul Mark Mitchell & Hareth Al-Janabi & Michael Schlander & Jeff Richardson & Angelo Iezzi & Jasper Ubels & Joanna Coast, 2020. "Comparing the German Translation of the ICECAP-A Capability Wellbeing Measure to the Original English Version: Psychometric Properties across Healthy Samples and Seven Health Condition Groups," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 15(3), pages 651-673, July.
    10. Helena Hörder & Susanne Gustafsson & Therese Rydberg & Ingmar Skoog & Margda Waern, 2016. "A Cross-Cultural Adaptation of the ICECAP-O: Test–Retest Reliability and Item Relevance in Swedish 70-Year-Olds," Societies, MDPI, vol. 6(4), pages 1-6, September.
    11. Petra Baji & Miklós Farkas & Ágota Dobos & Zsombor Zrubka & Levente Kovács & László Gulácsi & Márta Péntek, 2021. "Comparing the measurement properties of the ICECAP-A and ICECAP-O instruments in ages 50–70: a cross-sectional study on a representative sample of the Hungarian general population," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(9), pages 1453-1466, December.
    12. Judith Dams & Elisabeth Huynh & Steffi Riedel-Heller & Margrit Löbner & Christian Brettschneider & Hans-Helmut König, 2021. "German tariffs for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluations at the end of life," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(3), pages 365-380, April.
    13. Huynh, Elisabeth & Coast, Joanna & Rose, John & Kinghorn, Philip & Flynn, Terry, 2017. "Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life," Social Science & Medicine, Elsevier, vol. 189(C), pages 114-128.
    14. Tapager, Ina & Joensen, Lene Eide & Vrangbæk, Karsten, 2022. "The role of self-efficacy, well-being capability and diabetes care assessment for emotional and diabetes management challenges during the COVID-19 pandemic: Findings from a follow-up study," Social Science & Medicine, Elsevier, vol. 310(C).
    15. Joanna Coast & Philip Kinghorn & Paul Mitchell, 2015. "The Development of Capability Measures in Health Economics: Opportunities, Challenges and Progress," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 8(2), pages 119-126, April.
    16. Sebastian Himmler & Job van Exel & Werner Brouwer, 2020. "Happy with Your Capabilities? Valuing ICECAP-O and ICECAP-A States Based on Experienced Utility Using Subjective Well-Being Data," Medical Decision Making, , vol. 40(4), pages 498-510, May.
    17. Hackert, Mariska Q.N. & van Exel, Job & Brouwer, Werner B.F., 2020. "Well-being of Older People (WOOP): Quantitative validation of a new outcome measure for use in economic evaluations," Social Science & Medicine, Elsevier, vol. 259(C).
    18. Himmler, Sebastian & Jonker, Marcel & van Krugten, Frédérique & Hackert, Mariska & van Exel, Job & Brouwer, Werner, 2022. "Estimating an anchored utility tariff for the well-being of older people measure (WOOP) for the Netherlands," Social Science & Medicine, Elsevier, vol. 301(C).
    19. Matthew Franklin & Katherine Payne & Rachel A. Elliott, 2018. "Quantifying the Relationship between Capability and Health in Older People: Can’t Map, Won’t Map," Medical Decision Making, , vol. 38(1), pages 79-94, January.
    20. Clarke, Philip & Erreygers, Guido, 2020. "Defining and measuring health poverty," Social Science & Medicine, Elsevier, vol. 244(C).

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:plo:pone00:0236584. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: plosone (email available below). General contact details of provider: https://journals.plos.org/plosone/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.