{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T10:23:31Z","timestamp":1776335011798,"version":"3.51.2"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2018,10,29]],"date-time":"2018-10-29T00:00:00Z","timestamp":1540771200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000664","name":"Health Technology Assessment Programme","doi-asserted-by":"publisher","award":["10\/102\/03"],"award-info":[{"award-number":["10\/102\/03"]}],"id":[{"id":"10.13039\/501100000664","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pilot Feasibility Stud"],"published-print":{"date-parts":[[2018,12]]},"DOI":"10.1186\/s40814-018-0357-6","type":"journal-article","created":{"date-parts":[[2018,10,29]],"date-time":"2018-10-29T02:47:44Z","timestamp":1540781264000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["The feasibility of using the EQ-5D-3L with adults with mild to moderate learning disabilities within a randomized control trial: a qualitative evaluation"],"prefix":"10.1186","volume":"4","author":[{"given":"A. M.","family":"Russell","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. L.","family":"O\u2019Dwyer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1972-7395","authenticated-orcid":false,"given":"L. D.","family":"Bryant","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A. O.","family":"House","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. C.","family":"Birtwistle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Meer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A.","family":"Wright-Hughes","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"R. E. A.","family":"Walwyn","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"E.","family":"Graham","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A. J.","family":"Farrin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C. T.","family":"Hulme","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2018,10,29]]},"reference":[{"key":"357_CR1","volume-title":"Death by indifference: 74 deaths and counting. A progress report 5 years on","author":"MENCAP","year":"2012","unstructured":"MENCAP. Death by indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap; 2012."},{"key":"357_CR2","volume-title":"Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD)","author":"P Heslop","year":"2013","unstructured":"Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: Norah Fry Research Centre. resources for persons with intellectual disabilities; 2013."},{"issue":"4","key":"357_CR3","doi-asserted-by":"publisher","first-page":"337","DOI":"10.1001\/jama.2017.19138","volume":"319","author":"CY Spong","year":"2018","unstructured":"Spong CY, Bianchi DW. Improving public health requires inclusion of underrepresented populations in research. JAMA. 2018;319(4):337\u20138.","journal-title":"JAMA"},{"issue":"1","key":"357_CR4","doi-asserted-by":"publisher","first-page":"431","DOI":"10.1186\/1472-6963-12-431","volume":"12","author":"D Jahagirdar","year":"2012","unstructured":"Jahagirdar D, Kroll T, Ritchie K, Wyke S. Using patient reported outcome measures in health services: a qualitative study on including people with low literacy skills and learning disabilities. BMC Health Serv Res. 2012;12(1):431.","journal-title":"BMC Health Serv Res"},{"issue":"9","key":"357_CR5","doi-asserted-by":"publisher","first-page":"800","DOI":"10.1111\/jir.12091","volume":"58","author":"M Feldman","year":"2014","unstructured":"Feldman M, 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"},{"issue":"1","key":"357_CR6","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1016\/0168-8510(96)00822-6","volume":"37","author":"R Brooks","year":"1996","unstructured":"Brooks R. EuroQol: the current state of play. Health Policy. 1996;37(1):53\u201372.","journal-title":"Health Policy"},{"key":"357_CR7","unstructured":"National Institute for Health and Clinical Excellence. Guide to the methods of technology appraisal. London: National Institute for Health and Care Excellence; 2013."},{"key":"357_CR8","unstructured":"van Reenen MO, M. EQ-5D-3L User Guide: Basic information on how to use the EQ-5D-3L instrument. Rotterdam: EuroQol Research Foundation; 2015."},{"issue":"4","key":"357_CR9","doi-asserted-by":"publisher","first-page":"395","DOI":"10.1111\/j.1464-5491.2010.03136.x","volume":"28","author":"MF Janssen","year":"2011","unstructured":"Janssen MF, Lubetkin EI, Sekhobo JP, Pickard AS. The use of the EQ-5D preference-based health status measure in adults with type 2 diabetes mellitus. Diabet Med. 2011;28(4):395\u2013413.","journal-title":"Diabet Med"},{"key":"357_CR10","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1186\/1745-6215-14-71","volume":"14","author":"RJ Beeken","year":"2013","unstructured":"Beeken RJ, Spanos D, Fovargue S, Hunter R, Omar R, Hassiotis A, et al. Piloting a manualised weight management programme (Shape Up-LD) for overweight and obese persons with mild-moderate learning disabilities: study protocol for a pilot randomised controlled trial. Trials. 2013;14:71.","journal-title":"Trials"},{"key":"357_CR11","doi-asserted-by":"publisher","first-page":"125","DOI":"10.1186\/s12966-015-0290-5","volume":"12","author":"CA Melville","year":"2015","unstructured":"Melville CA, Mitchell F, Stalker K, Matthews L, McConnachie A, Murray HM, et al. Effectiveness of a walking programme to support adults with intellectual disabilities to increase physical activity: walk well cluster-randomised controlled trial. Int J Behav Nutr Phys Act. 2015;12:125.","journal-title":"Int J Behav Nutr Phys Act"},{"issue":"6","key":"357_CR12","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3310\/hta5060","volume":"5","author":"RP Riemsma","year":"2001","unstructured":"Riemsma RP, Forbes CA, Glanville JM, Eastwood AJ, Kleijnen J. General health status measures for people with cognitive impairment: learning disability and acquired brain injury. Health Technol Assess. 2001;5(6):1\u2013100.","journal-title":"Health Technol Assess"},{"issue":"1","key":"357_CR13","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1007\/s10198-016-0788-z","volume":"17","author":"J L\u00f3pez-Bastida","year":"2016","unstructured":"L\u00f3pez-Bastida J, Linertov\u00e1 R, Oliva-Moreno J, Posada-de-la-Paz M, Serrano-Aguilar P, Kanavos P, et al. Social\/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe. Eur J Health Econ. 2016;17(1):99\u2013108.","journal-title":"Eur J Health Econ"},{"key":"357_CR14","doi-asserted-by":"crossref","unstructured":"Chevreul K, Berg Brigham K, Cl\u00e9ment MC, Poitou C, Tauber M. Economic burden and health-related quality of life associated with Prader\u2013Willi syndrome in France. J Intellect Disabil Res. 2016.","DOI":"10.1111\/jir.12288"},{"issue":"1","key":"357_CR15","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1007\/s10198-016-0784-3","volume":"17","author":"K Chevreul","year":"2016","unstructured":"Chevreul K, Gandr\u00e9 C, Brigham KB, L\u00f3pez-Bastida J, Linertov\u00e1 R, Oliva-Moreno J, et al. Social\/economic costs and health-related quality of life in patients with fragile X syndrome in Europe. Eur J Health Econ. 2016;17(1):43\u201352.","journal-title":"Eur J Health Econ"},{"issue":"9","key":"357_CR16","doi-asserted-by":"publisher","first-page":"1035","DOI":"10.1016\/j.jclinepi.2014.04.005","volume":"67","author":"A Devine","year":"2014","unstructured":"Devine A, Taylor SJ, Spencer A, Diaz-Ordaz K, Eldridge S, Underwood M. The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains. J Clin Epidemiol. 2014;67(9):1035\u201343.","journal-title":"J Clin Epidemiol"},{"issue":"12","key":"357_CR17","doi-asserted-by":"publisher","first-page":"1186","DOI":"10.1097\/00005650-200212000-00006","volume":"40","author":"H Tamim","year":"2002","unstructured":"Tamim H, McCusker J, Dendukuri N. Proxy reporting of quality of life using the EQ-5D. Med Care. 2002;40(12):1186\u201395.","journal-title":"Med Care"},{"issue":"6","key":"357_CR18","doi-asserted-by":"publisher","first-page":"875","DOI":"10.1007\/s11136-010-9648-y","volume":"19","author":"N Wille","year":"2010","unstructured":"Wille N, Badia X, Bonsel G, Burstrom K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res. 2010;19(6):875\u201386.","journal-title":"Qual Life Res"},{"issue":"12","key":"357_CR19","doi-asserted-by":"publisher","first-page":"909","DOI":"10.1016\/S2215-0366(17)30426-1","volume":"4","author":"A Jahoda","year":"2017","unstructured":"Jahoda A, Hastings R, Hatton C, Cooper S-A, Dagnan D, Zhang R, et al. Comparison of behavioural activation with guided self-help for treatment of depression in adults with intellectual disabilities: a randomised controlled trial. Lancet Psychiatry. 2017;4(12):909\u201319.","journal-title":"Lancet Psychiatry"},{"issue":"3","key":"357_CR20","doi-asserted-by":"publisher","first-page":"229","DOI":"10.1017\/S0007114517001933","volume":"118","author":"L Harris","year":"2017","unstructured":"Harris L, Hankey C, Jones N, Pert C, Murray H, Tobin J, et al. A cluster randomised control trial of a multi-component weight management programme for adults with intellectual disabilities and obesity. Br J Nutr. 2017;118(3):229\u201340.","journal-title":"Br J Nutr"},{"issue":"7","key":"357_CR21","doi-asserted-by":"publisher","first-page":"511","DOI":"10.1016\/S2215-0366(14)00078-9","volume":"1","author":"SA Cooper","year":"2014","unstructured":"Cooper SA, Morrison J, Allan LM, McConnachie A, Greenlaw N, Melville CA, et al. Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial. Lancet Psychiatry. 2014;1(7):511\u201321.","journal-title":"Lancet Psychiatry"},{"issue":"2","key":"357_CR22","doi-asserted-by":"publisher","first-page":"95","DOI":"10.1016\/j.dhjo.2008.11.005","volume":"2","author":"MC Boland","year":"2009","unstructured":"Boland MC, Daly L, Staines A. Self-rated health and quality of life in adults attending regional disability services in Ireland. Disabil Health J. 2009;2(2):95\u2013103.","journal-title":"Disabil Health J"},{"key":"357_CR23","doi-asserted-by":"crossref","unstructured":"House A, Bryant L, Russell A, Wright-Hughes A, Graham L, Walwyn R, et al. A randomised controlled feasibility trial of supported self-management in adults with type 2 diabetes and a learning disability: OK diabetes. Diabet Med. 2018.","DOI":"10.1111\/dme.13626"},{"key":"357_CR24","doi-asserted-by":"crossref","unstructured":"O'Dwyer J, Russell A, Bryant L, Walwyn R, Wright-Hughes A, Graham E, et al. Developing and feasibility testing of data collection methods for an economic evaluation of a manualised supported diabetes self-management programme for people with learning disabilities. Pilot and Feasibility Studies 2018 (In Press).","DOI":"10.1186\/s40814-018-0266-8"},{"key":"357_CR25","doi-asserted-by":"crossref","unstructured":"EuroQol Group. EuroQol-a new facility for the measurement of health related quality of life. The EuroQol group. Health Policy. 1990;16(3):199\u2013208.","DOI":"10.1016\/0168-8510(90)90421-9"},{"issue":"26","key":"357_CR26","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3310\/hta22260","volume":"22","author":"Allan House","year":"2018","unstructured":"House A, Bryant L, Russell AM, Wright-Hughes AM, Graham EH, Walwyn R, et al. Managing with learning disability and diabetes - OK-DIABETES: a case finding study and feasibility randomised controlled trial. London: Health Technology Assessment, No. 22.26; 2018.","journal-title":"Health Technology Assessment"},{"issue":"6","key":"357_CR27","doi-asserted-by":"publisher","first-page":"1076","DOI":"10.1111\/jar.12358","volume":"30","author":"RJ Stancliffe","year":"2017","unstructured":"Stancliffe RJ, Wiese M, Read S, Jeltes G, Clayton JM. Assessing knowledge and attitudes about end of life: evaluation of three instruments designed for adults with intellectual disability. J Appl Res Intellect Disabil. 2017;30(6):1076\u201388.","journal-title":"J Appl Res Intellect Disabil"},{"issue":"1","key":"357_CR28","doi-asserted-by":"publisher","first-page":"67","DOI":"10.1136\/jnnp.69.1.67","volume":"69","author":"A Schrag","year":"2000","unstructured":"Schrag A, Selai C, Jahanshahi M, Quinn NP. The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2000;69(1):67\u201373.","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"12","key":"357_CR29","doi-asserted-by":"publisher","first-page":"1132","DOI":"10.1002\/gps.1619","volume":"21","author":"A Vogel","year":"2006","unstructured":"Vogel A, Mortensen EL, Hasselbalch SG, Andersen BB, Waldemar G. Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease. Int J Geriatr Psychiatr. 2006;21(12):1132\u20138.","journal-title":"Int J Geriatr Psychiatr"},{"key":"357_CR30","unstructured":"EuroQol Research Foundation. \n                    https:\/\/euroqol.org\/wp-content\/uploads\/2016\/09\/EQ-5D-3L_UserGuide_2015.pdf\n                    \n                  ."}],"container-title":["Pilot and Feasibility Studies"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s40814-018-0357-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s40814-018-0357-6\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s40814-018-0357-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,10,28]],"date-time":"2019-10-28T20:21:18Z","timestamp":1572294078000},"score":1,"resource":{"primary":{"URL":"https:\/\/pilotfeasibilitystudies.biomedcentral.com\/articles\/10.1186\/s40814-018-0357-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,10,29]]},"references-count":30,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2018,12]]}},"alternative-id":["357"],"URL":"https:\/\/doi.org\/10.1186\/s40814-018-0357-6","relation":{},"ISSN":["2055-5784"],"issn-type":[{"value":"2055-5784","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,10,29]]},"assertion":[{"value":"17 May 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 October 2018","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 October 2018","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Ethical approval was granted for the study by the Yorkshire and Humber Research Ethics Committee [Reference: 12\/YH\/0304]. Informed consent to participate was gained from every participant.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent for research participation and publication of data collected was gained from every participant.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Publisher\u2019s Note"}}],"article-number":"164"}}