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Defining health-related quality of life for young wheelchair users: A qualitative health economics study

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  • Nathan Bray
  • Jane Noyes
  • Nigel Harris
  • Rhiannon Tudor Edwards

Abstract

Background: Wheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their parents define health-related quality of life in relation to mobility impairment and wheelchair use. Methods: The sampling frame was children with impaired mobility (≤18 years) who use a wheelchair and their parents. Data were collected through semi-structured face-to-face interviews conducted in participants’ homes. Qualitative framework analysis was used to analyse the interview transcripts. An a priori thematic coding framework was developed. Emerging codes were grouped into categories, and refined into analytical themes. The data were used to build an understanding of how children with impaired mobility define health-related quality of life in relation to mobility impairment, and to assess the applicability of two standard measures of health-related quality of life. Results: Eleven children with impaired mobility and 24 parents were interviewed across 27 interviews. Participants defined mobility-related quality of life through three distinct but interrelated concepts: 1) participation and positive experiences; 2) self-worth and feeling fulfilled; 3) health and functioning. A good degree of consensus was found between child and parent responses, although there was some evidence to suggest a shift in perception of mobility-related quality of life with child age. Conclusions: Young wheelchair users define health-related quality of life in a distinct way as a result of their mobility impairment and adaptation use. Generic, preference-based measures of health-related quality of life lack sensitivity in this population. Development of a mobility-related quality of life outcome measure for children is recommended.

Suggested Citation

  • Nathan Bray & Jane Noyes & Nigel Harris & Rhiannon Tudor Edwards, 2017. "Defining health-related quality of life for young wheelchair users: A qualitative health economics study," PLOS ONE, Public Library of Science, vol. 12(6), pages 1-20, June.
    • Handle: RePEc:plo:pone00:0179269
    DOI: 10.1371/journal.pone.0179269
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    1. Paul Dolan & Daniel Kahneman, 2008. "Interpretations Of Utility And Their Implications For The Valuation Of Health," Economic Journal, Royal Economic Society, vol. 118(525), pages 215-234, January.
    2. Versteegh, M.M. & Brouwer, W.B.F., 2016. "Patient and general public preferences for health states: A call to reconsider current guidelines," Social Science & Medicine, Elsevier, vol. 165(C), pages 66-74.
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    Cited by:

    1. Camilla Aparecida Silva de Oliveira & Andréa Maria Duarte Vargas & Fernanda de Morais Ferreira & Efigênia Ferreira e Ferreira, 2020. "Brazilian Children’s Understanding of the Quality of Life in Their Living Environment: A Qualitative Study," IJERPH, MDPI, vol. 17(14), pages 1-17, July.
    2. Samantha Husbands & Paul Mark Mitchell & Joanna Coast, 2020. "A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(3), pages 257-288, June.
    3. Nathan Bray & Llinos Haf Spencer & Rhiannon Tudor Edwards, 2020. "Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness," Health Economics Review, Springer, vol. 10(1), pages 1-38, December.

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