{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T08:55:12Z","timestamp":1773392112824,"version":"3.50.1"},"reference-count":20,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T00:00:00Z","timestamp":1714348800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T00:00:00Z","timestamp":1714348800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["DRF-2017-10-159"],"award-info":[{"award-number":["DRF-2017-10-159"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Health Qual Life Outcomes"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12955-024-02254-x","type":"journal-article","created":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T16:02:57Z","timestamp":1714406577000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities"],"prefix":"10.1186","volume":"22","author":[{"given":"John L.","family":"O\u2019Dwyer","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Louise D.","family":"Bryant","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claire","family":"Hulme","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paul","family":"Kind","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David M.","family":"Meads","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,4,29]]},"reference":[{"key":"2254_CR1","unstructured":"Mencap. What is a learning disability? 2023. Retrieved from: https:\/\/www.mencap.org.uk\/learning-disability-explained\/research-and-statistics."},{"issue":"3","key":"2254_CR2","doi-asserted-by":"publisher","first-page":"325","DOI":"10.1111\/jar.12417","volume":"31","author":"L O\u2019Leary","year":"2018","unstructured":"O\u2019Leary L, Cooper S-A, Hughes-McCormack L. Early death and causes of death of people with intellectual disabilities: a systematic review. J Appl Res Intellect Disabil. 2018;31(3):325\u201342.","journal-title":"J Appl Res Intellect Disabil"},{"key":"2254_CR3","volume-title":"Learning from Lives and Deaths-People with a learning disability and autistic people (LeDeR) report for 2021","author":"A. White","year":"2022","unstructured":"White A., Sheehan R., Ding J., et al. Learning from Lives and Deaths-People with a learning disability and autistic people (LeDeR) report for 2021. 2022."},{"key":"2254_CR4","unstructured":"NHS. The NHS long term plan. 2019. Retrieved from; https:\/\/www.longtermplan.nhs.uk\/."},{"issue":"9","key":"2254_CR5","doi-asserted-by":"publisher","first-page":"800","DOI":"10.1111\/jir.12091","volume":"58","author":"MA Feldman","year":"2014","unstructured":"Feldman MA, Bosett J, Collet C, Burnham-Riosa P. Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. J Intellect Disabil Res. 2014;58(9):800\u20139.","journal-title":"J Intellect Disabil Res"},{"key":"2254_CR6","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1186\/s40814-018-0266-8","volume":"4","author":"JL O\u2019Dwyer","year":"2018","unstructured":"O\u2019Dwyer JL, Russell AM, Bryant LD, et al. Developing and feasibility testing of data collection methods for an economic evaluation of a supported selfmanagement programme for adults with a learning disability and type 2 diabetes. Pilot Feasibility Stud. 2018;4:80.","journal-title":"Pilot Feasibility Stud"},{"issue":"2","key":"2254_CR7","doi-asserted-by":"publisher","first-page":"230","DOI":"10.1111\/jar.13056","volume":"36","author":"V Benedetto","year":"2023","unstructured":"Benedetto V, Filipe L, Harris C, Tahir N, Doherty A, Clegg A. Outcome measures for economic evaluations and cost-effectiveness analyses of interventions for people with intellectual disabilities: a methodological systematic review. J Appl Res Intellect Disabil. 2023;36(2):230\u201340.","journal-title":"J Appl Res Intellect Disabil"},{"key":"2254_CR8","unstructured":"NICE, UK. \"Developing NICE guidelines: the manual. Process and methods.\" [PMG36] 2022."},{"issue":"3","key":"2254_CR9","doi-asserted-by":"publisher","first-page":"159","DOI":"10.1111\/j.1741-1130.2012.00353.x","volume":"9","author":"C Claes","year":"2012","unstructured":"Claes C, Vandevelde S, Van Hove G, van Loon J, Verschelden G, Schalock R. Relationship between Self-Report and Proxy ratings on assessed personal quality of life-related outcomes. J Policy Pract Intellect Disabil. 2012;9(3):159\u201365.","journal-title":"J Policy Pract Intellect Disabil"},{"issue":"11","key":"2254_CR10","doi-asserted-by":"publisher","first-page":"4248","DOI":"10.1016\/j.ridd.2013.09.009","volume":"34","author":"G Balboni","year":"2013","unstructured":"Balboni G, Coscarelli A, Giunti G, Schalock RL. The assessment of the quality of life of adults with intellectual disability: the use of self-report and report of others assessment strategies. Res Dev Disabil. 2013;34(11):4248\u201354.","journal-title":"Res Dev Disabil"},{"issue":"1","key":"2254_CR11","doi-asserted-by":"publisher","first-page":"202","DOI":"10.1016\/j.yebeh.2008.02.005","volume":"13","author":"F Zimmermann","year":"2008","unstructured":"Zimmermann F, Endermann M. Self-proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities. Epilepsy Behav. 2008;13(1):202\u201311.","journal-title":"Epilepsy Behav"},{"issue":"6","key":"2254_CR12","doi-asserted-by":"publisher","first-page":"675","DOI":"10.1007\/s40273-018-0623-8","volume":"36","author":"MF Janssen","year":"2018","unstructured":"Janssen MF, Bonsel GJ, Luo N, Is. EQ-5D-5L Better Than EQ-5D-3L? A Head-to-Head Comparison of Descriptive Systems and Value sets from Seven Countries. PharmacoEconomics. 2018;36(6):675\u201397.","journal-title":"PharmacoEconomics"},{"key":"2254_CR13","doi-asserted-by":"publisher","first-page":"164","DOI":"10.1186\/s40814-018-0357-6","volume":"4","author":"AM Russell","year":"2018","unstructured":"Russell AM, O\u2019Dwyer JL, Bryant LD, et al. The feasibility of using the EQ-5D-3L with adults with mild to moderate learning disabilities within a randomized control trial: a qualitative evaluation. Pilot Feasibility Stud. 2018;4:164.","journal-title":"Pilot Feasibility Stud"},{"key":"2254_CR14","unstructured":"Your Health Matters. easy on the i. 2019; Retrieved from: https:\/\/www.learningdisabilityservice-leeds.nhs.uk\/easy-on-the-i\/image-bank\/."},{"key":"2254_CR15","volume-title":"Qualitative methods for health economics","author":"J Coast","year":"2017","unstructured":"Coast J. Qualitative methods for health economics. Rowman & Littlefield; 2017."},{"issue":"1","key":"2254_CR16","doi-asserted-by":"publisher","first-page":"201","DOI":"10.1186\/s12913-015-0862-8","volume":"15","author":"KM van Leeuwen","year":"2015","unstructured":"van Leeuwen KM, Jansen AP, Muntinga ME, et al. Exploration of the content validity and feasibility of the EQ-5D-3L, ICECAP-O and ASCOT in older adults. BMC Health Serv Res. 2015;15(1):201.","journal-title":"BMC Health Serv Res"},{"issue":"8","key":"2254_CR17","doi-asserted-by":"publisher","first-page":"967","DOI":"10.1016\/j.jval.2011.06.014","volume":"14","author":"DL Patrick","year":"2011","unstructured":"Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity\u2013establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1\u2013eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967\u201377.","journal-title":"Value Health"},{"issue":"1","key":"2254_CR18","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1186\/1471-2288-13-117","volume":"13","author":"NK Gale","year":"2013","unstructured":"Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117.","journal-title":"BMC Med Res Methodol"},{"issue":"26","key":"2254_CR19","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3310\/hta22260","volume":"22","author":"A House","year":"2018","unstructured":"House A, Bryant L, Russell AM, et al. Managing with learning disability and diabetes: OK-Diabetes - a case-finding study and feasibility randomised controlled trial. Health Technol Assess. 2018;22(26):1\u2013328.","journal-title":"Health Technol Assess"},{"issue":"3","key":"2254_CR20","doi-asserted-by":"publisher","first-page":"225","DOI":"10.1007\/s41669-018-0083-2","volume":"2","author":"DG Whitehurst","year":"2018","unstructured":"Whitehurst DG, Latimer NR, Kagan A, et al. Developing accessible, pictorial versions of health-related quality-of-life instruments suitable for economic evaluation: a report of preliminary studies conducted in Canada and the United Kingdom. Pharmacoecon Open 2018;2(3):225\u201331.","journal-title":"Pharmacoecon Open\u00a0"}],"container-title":["Health and Quality of Life Outcomes"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12955-024-02254-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12955-024-02254-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12955-024-02254-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T16:06:12Z","timestamp":1714406772000},"score":1,"resource":{"primary":{"URL":"https:\/\/hqlo.biomedcentral.com\/articles\/10.1186\/s12955-024-02254-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4,29]]},"references-count":20,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["2254"],"URL":"https:\/\/doi.org\/10.1186\/s12955-024-02254-x","relation":{},"ISSN":["1477-7525"],"issn-type":[{"value":"1477-7525","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,4,29]]},"assertion":[{"value":"24 September 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 April 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 April 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethical approval was granted for the study by the University of Leeds Faculty of Medicine and Health Research Ethics Committee [Reference: MREC 18\u2013053].Informed consent to participate was gained from every participant in this study.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"37"}}