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Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities.

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  • Additional Information
    • Source:
      Publisher: BioMed Central Country of Publication: England NLM ID: 101153626 Publication Model: Electronic Cited Medium: Internet ISSN: 1477-7525 (Electronic) Linking ISSN: 14777525 NLM ISO Abbreviation: Health Qual Life Outcomes Subsets: MEDLINE
    • Publication Information:
      Original Publication: [London] : BioMed Central, c2003-
    • Subject Terms:
      Quality of Life* ; Learning Disabilities*/psychology; Humans ; Adult ; Male ; Female ; Surveys and Questionnaires ; Health Status ; United Kingdom ; Focus Groups ; Qualitative Research ; Young Adult ; Psychometrics
    • Abstract:
      Background: Approximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males. The NHS Long Term Plan (January 2019) recognises learning disabilities as a clinical priority area. People with a learning disability are often excluded from research by design or lack of reasonable adjustments, and self-reported health status/health-related quality of life questionnaires such as the EQ-5D are often not appropriate for this population. Here, we systematically examine the EQ-5D-3L (its wording, content, and format) using qualitative methods to inform the adaption of the measure for use with adults with mild to moderate learning disabilities.
      Methods: Think-aloud interviews with carers/advocates of learning-disabled adults were undertaken to explore the difficulties with completing the EQ-5D-3L. Alternative wording, language, structure, and images were developed using focus groups, stakeholder reference groups, and an expert panel. Data analysis followed a framework method.
      Results: The dimensions and levels within the EQ-5D-3L were deemed appropriate for adults with mild to moderate learning disabilities. Consensus on wording, structure, and images was reached through an iterative process, and an adapted version of the EQ-5D-3L was finalised.
      Conclusion: The EQ-5D-3L adapted for adults with mild to moderate intellectual/learning disabilities can facilitate measurement of self-reported health status. Research is underway to assess the potential use of the adaptation for economic evaluation.
      (© 2024. The Author(s).)
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    • Grant Information:
      DRF-2017-10-159 National Institute for Health and Care Research
    • Contributed Indexing:
      Keywords: EQ-5D; Health-related quality of life; Intellectual disability; Learning disability; Patient-reported outcome measures.
    • Publication Date:
      Date Created: 20240429 Date Completed: 20240430 Latest Revision: 20240502
    • Publication Date:
      20240502
    • Accession Number:
      PMC11059748
    • Accession Number:
      10.1186/s12955-024-02254-x
    • Accession Number:
      38685039