IDEAS home Printed from https://ideas.repec.org/a/spr/hecrev/v10y2020i1d10.1186_s13561-020-00270-3.html
   My bibliography  Save this article

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

Author

Listed:
  • Nathan Bray

    (Bangor University
    Bangor University)

  • Llinos Haf Spencer

    (Bangor University
    Bangor University)

  • Rhiannon Tudor Edwards

    (Bangor University
    Bangor University)

Abstract

Introduction Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. Methods Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. Results A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures. Conclusion Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments.

Suggested Citation

  • 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.
  • Handle: RePEc:spr:hecrev:v:10:y:2020:i:1:d:10.1186_s13561-020-00270-3
    DOI: 10.1186/s13561-020-00270-3
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1186/s13561-020-00270-3
    File Function: Abstract
    Download Restriction: no

    File URL: https://libkey.io/10.1186/s13561-020-00270-3?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. 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.
    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. 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.
    2. 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.

    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:spr:hecrev:v:10:y:2020:i:1:d:10.1186_s13561-020-00270-3. 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: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com/economics/journal/13561 .

    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.