{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,6]],"date-time":"2026-03-06T15:14:42Z","timestamp":1772810082481,"version":"3.50.1"},"reference-count":58,"publisher":"BMJ","issue":"11","funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["PB-PG-0213-30042"],"award-info":[{"award-number":["PB-PG-0213-30042"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2016,8,25]]},"published-print":{"date-parts":[[2016,11]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial design<\/jats:title>\n                    <jats:p>A randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Epilepsy clinics in 1 English National Health Service (NHS) Trust.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Patients with learning disabilities and epilepsy who had: a seizure within the past 12\u2005months, meaningful communication and a carer with sufficient proficiency in English.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Intervention<\/jats:title>\n                    <jats:p>Participants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20\u2005weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcome measures<\/jats:title>\n                    <jats:p>7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcome<\/jats:title>\n                    <jats:p>The recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20\u2005weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>All feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial registration number<\/jats:title>\n                    <jats:p>ISRCTN80067039.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2016-012993","type":"journal-article","created":{"date-parts":[[2016,11,14]],"date-time":"2016-11-14T05:55:43Z","timestamp":1479102943000},"page":"e012993","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":12,"title":["Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial"],"prefix":"10.1136","volume":"6","author":[{"given":"Silvana E","family":"Mengoni","sequence":"first","affiliation":[{"name":"Department of Psychology, Centre for Health Services and Clinical Research, University of Hertfordshire, Hatfield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bob","family":"Gates","sequence":"additional","affiliation":[{"name":"Institute for Practice, Interdisciplinary Research and Enterprise (INSPIRE), University of West London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Georgina","family":"Parkes","sequence":"additional","affiliation":[{"name":"Learning Disabilities Services, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Wellsted","sequence":"additional","affiliation":[{"name":"Department of Psychology, Centre for Health Services and Clinical Research, University of Hertfordshire, Hatfield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Garry","family":"Barton","sequence":"additional","affiliation":[{"name":"Norwich Medical School and Norwich Clinical Trials Unit, University of East Anglia, Norwich, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Howard","family":"Ring","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, University of Cambridge, School of Clinical Medicine, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Ellen","family":"Khoo","sequence":"additional","affiliation":[{"name":"Research and Development, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deela","family":"Monji-Patel","sequence":"additional","affiliation":[{"name":"Research and Development, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK"},{"name":"Division 4, Mental Health, NIHR Clinical Research Network: Eastern, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karin","family":"Friedli","sequence":"additional","affiliation":[{"name":"Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Asif","family":"Zia","sequence":"additional","affiliation":[{"name":"Learning Disabilities Services, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa","family":"Irvine","sequence":"additional","affiliation":[{"name":"Norwich Medical School and Norwich Clinical Trials Unit, University of East Anglia, Norwich, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie-Anne","family":"Durand","sequence":"additional","affiliation":[{"name":"Department of Psychology, Centre for Health Services and Clinical Research, University of Hertfordshire, Hatfield, UK"},{"name":"The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, New Hampshire, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2016,11,10]]},"reference":[{"key":"2025121510504041000_6.11.e012993.1","doi-asserted-by":"publisher","DOI":"10.1002\/mrdd.20098"},{"key":"2025121510504041000_6.11.e012993.2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.a2507"},{"key":"2025121510504041000_6.11.e012993.3","unstructured":"Heslop P , Blair P , Fleming P , et al . Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). 2013. http:\/\/www.bris.ac.uk\/cipold\/reports\/"},{"key":"2025121510504041000_6.11.e012993.4","doi-asserted-by":"publisher","DOI":"10.1093\/fampra\/17.5.405"},{"key":"2025121510504041000_6.11.e012993.5","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1016\/j.seizure.2015.03.016","article-title":"Prevalence of epilepsy among people with intellectual disabilities: a systematic review","volume":"29","author":"Robertson","year":"2015","journal-title":"Seizure"},{"key":"2025121510504041000_6.11.e012993.6","unstructured":"World Health Organisation. Epilepsy: Fact Sheet No. 999. 2015. http:\/\/www.who.int\/mediacentre\/factsheets\/fs999\/en\/"},{"key":"2025121510504041000_6.11.e012993.7","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2007.01025.x"},{"key":"2025121510504041000_6.11.e012993.8","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2006.04.002"},{"key":"2025121510504041000_6.11.e012993.9","doi-asserted-by":"crossref","first-page":"687","DOI":"10.1111\/j.1365-2788.2009.01182.x","article-title":"Consensus guidelines into the management of epilepsy in adults with an intellectual disability","volume":"53","author":"Kerr","year":"2009","journal-title":"J Intellect Disabil Res"},{"key":"2025121510504041000_6.11.e012993.10","doi-asserted-by":"crossref","first-page":"253","DOI":"10.1352\/1944-7558-119.3.253","article-title":"Epidemiology of epilepsy in older adults with an intellectual disability in Ireland: associations and service implications","volume":"119","author":"McCarron","year":"2014","journal-title":"Am J Intellect Dev Disabil"},{"key":"2025121510504041000_6.11.e012993.11","unstructured":"Glover G , Evison F . Hospital admissions that should not happen: improving health and lives. Learning Disabilities Observatory. 2013. https:\/\/www.improvinghealthandlives.org.uk\/publications\/1169"},{"key":"2025121510504041000_6.11.e012993.12","doi-asserted-by":"crossref","first-page":"1902","DOI":"10.1111\/epi.12848","article-title":"A White Paper on the medical and social needs of people with epilepsy and intellectual disability: the Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy","volume":"55","author":"Kerr","year":"2014","journal-title":"Epilepsia"},{"key":"2025121510504041000_6.11.e012993.13","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2788.2000.00270.x"},{"key":"2025121510504041000_6.11.e012993.14","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1016\/j.seizure.2015.04.004","article-title":"Mortality in people with intellectual disabilities and epilepsy: a systematic review","volume":"29","author":"Robertson","year":"2015","journal-title":"Seizure"},{"key":"2025121510504041000_6.11.e012993.15","doi-asserted-by":"crossref","unstructured":"Robertson J , Baines S , Emerson E , et al . Service responses to people with intellectual disabilities and epilepsy: a systematic review. J Appl Res Intellect Disabil 2015.","DOI":"10.1016\/j.seizure.2015.03.016"},{"key":"2025121510504041000_6.11.e012993.16","unstructured":"National Institute for Health and Care Excellence. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. NICE clinical guideline 137: NICE, 2012. http:\/\/www.nice.org.uk\/guidance\/cg137"},{"key":"2025121510504041000_6.11.e012993.17","doi-asserted-by":"crossref","first-page":"84","DOI":"10.1016\/j.seizure.2007.07.004","article-title":"Examining a community model of epilepsy care for people with learning disabilities","volume":"17","author":"Reuber","year":"2008","journal-title":"Seizure"},{"key":"2025121510504041000_6.11.e012993.18","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2006.04.001"},{"key":"2025121510504041000_6.11.e012993.19","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12091"},{"key":"2025121510504041000_6.11.e012993.20","doi-asserted-by":"publisher","DOI":"10.1016\/S1059-1311(98)90002-4"},{"key":"2025121510504041000_6.11.e012993.21","first-page":"CD005502","article-title":"Non-pharmacological interventions for epilepsy in people with intellectual disabilities","volume":"4","author":"Beavis","year":"2007","journal-title":"Cochrane Database Syst Rev"},{"key":"2025121510504041000_6.11.e012993.22","doi-asserted-by":"crossref","unstructured":"Bradley PM , Lindsay B . Care delivery and self-management strategies for adults with epilepsy. Cochrane Database Syst Rev 2008;(1):CD006244.","DOI":"10.1002\/14651858.CD006244.pub2"},{"key":"2025121510504041000_6.11.e012993.23","doi-asserted-by":"crossref","unstructured":"Ramaratnam S , Baker GA , Goldstein LH . Psychological treatments for epilepsy. Cochrane Database Syst Rev 2008;(3):CD002029. doi:10.1002\/14651858.CD002029.pub3","DOI":"10.1002\/14651858.CD002029.pub3"},{"key":"2025121510504041000_6.11.e012993.24","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1016\/j.yebeh.2015.01.026","article-title":"An integrative review of the benefits of self-management interventions for adults with epilepsy","volume":"45","author":"Edward","year":"2015","journal-title":"Epilepsy Behav"},{"key":"2025121510504041000_6.11.e012993.25","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1016\/j.seizure.2016.06.022","article-title":"Self-management interventions for epilepsy in people with intellectual disabilities: a scoping review","volume":"41","author":"Dannenberg","year":"2016","journal-title":"Seizure"},{"key":"2025121510504041000_6.11.e012993.26","unstructured":"Hollins S , Bernal J , Thacker A , et al . Getting on with epilepsy. 2nd edn. UK: St George's Hospital Medical School and Gaskell, 2014."},{"key":"2025121510504041000_6.11.e012993.27","unstructured":"Beyond Words. What are Books Beyond Words n.d. http:\/\/booksbeyondwords.co.uk\/about\/"},{"key":"2025121510504041000_6.11.e012993.28","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1016\/S0891-4222(02)00091-4","article-title":"Do adults with mental retardation show pictorial superiority effects in recall and recognition?","volume":"23","author":"Cherry","year":"2002","journal-title":"Res Dev Disabil"},{"key":"2025121510504041000_6.11.e012993.29","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.05.004"},{"key":"2025121510504041000_6.11.e012993.30","doi-asserted-by":"publisher","DOI":"10.1177\/10883576070220040501"},{"key":"2025121510504041000_6.11.e012993.31","doi-asserted-by":"crossref","first-page":"455","DOI":"10.1186\/1745-6215-15-455","article-title":"Wordless intervention for epilepsy in learning disabilities (WIELD): study protocol for a randomized controlled feasibility trial","volume":"15","author":"Durand","year":"2014","journal-title":"Trials"},{"key":"2025121510504041000_6.11.e012993.32","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1016\/j.yebeh.2006.10.010","article-title":"The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale","volume":"10","author":"Buck","year":"2007","journal-title":"Epilepsy Behav"},{"key":"2025121510504041000_6.11.e012993.33","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1157.1994.tb02479.x"},{"key":"2025121510504041000_6.11.e012993.34","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-9903-x"},{"issue":"A","key":"2025121510504041000_6.11.e012993.35","doi-asserted-by":"crossref","first-page":"133","DOI":"10.1016\/j.yebeh.2016.09.029","article-title":"\u201cSometimes, it just stops me from doing anything\u201d: a qualitative exploration of epilepsy management in people with intellectual disabilities and their carers","volume":"64","author":"Mengoni","year":"2016","journal-title":"Epilepsy Behav"},{"key":"2025121510504041000_6.11.e012993.36","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2012.09.002"},{"key":"2025121510504041000_6.11.e012993.37","unstructured":"Department of Health. National Schedule of Reference Costs 2013\u201314. 2014. https:\/\/www.gov.uk\/government\/publications\/nhs-reference-costs-2013-to-2014"},{"key":"2025121510504041000_6.11.e012993.38","unstructured":"Curtis L . Unit costs of health and social care. The University of Kent, 2014."},{"key":"2025121510504041000_6.11.e012993.39","unstructured":"NHS: The Information Centre for health and social care. Prescription Cost Analysis: England 2013. Health and social care information centre, prescribing and primary care services: health and social care information centre, 2014."},{"key":"2025121510504041000_6.11.e012993.40","unstructured":"Office for National Statistics. Annual Survey of Hours and Earnings. 2013. http:\/\/www.ons.gov.uk\/ons\/rel\/ashe\/annual-survey-of-hours-and-earnings\/2013-revised-results\/index.html"},{"key":"2025121510504041000_6.11.e012993.41","unstructured":"Drummond MF , Sculpher MJ , Claxton K , et al . Methods for the economic evaluation of health care programmes. 4th edn. Oxford: Oxford University Press, 2015."},{"key":"2025121510504041000_6.11.e012993.42","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2012.02.008"},{"key":"2025121510504041000_6.11.e012993.43","doi-asserted-by":"publisher","DOI":"10.1002\/hec.944"},{"key":"2025121510504041000_6.11.e012993.44","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1002\/hec.843","article-title":"Regression methods for covariate adjustment and subgroup analysis for non-censored cost-effectiveness data","volume":"14","author":"Willan","year":"2004","journal-title":"Health Econ"},{"key":"2025121510504041000_6.11.e012993.45","doi-asserted-by":"publisher","DOI":"10.1002\/hec.1693"},{"key":"2025121510504041000_6.11.e012993.46","unstructured":"NICE. Guide to the methods of technology appraisal 2013. National Institute of Health and Clinical Excellence (NICE) publications, 2013."},{"key":"2025121510504041000_6.11.e012993.47","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"2025121510504041000_6.11.e012993.48","doi-asserted-by":"crossref","first-page":"28","DOI":"10.7748\/ldp.18.2.28.e1620","article-title":"An intervention for people with learning disabilities and epilepsy","volume":"49","author":"Mengoni","year":"2015","journal-title":"Learn Disabil Pract"},{"key":"2025121510504041000_6.11.e012993.49","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1111\/jar.12083","article-title":"Conceptualizing inclusive research with people with intellectual disability","volume":"27","author":"Bigby","year":"2014","journal-title":"J Appl Res Intellect Disabil"},{"key":"2025121510504041000_6.11.e012993.50","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1111\/j.1365-2788.2005.00714.x","article-title":"Development of a measure to assess the impact of epilepsy on people with an intellectual disability: the Glasgow Epilepsy Outcome Scale\u2014Client version (GEOS-C)","volume":"50","author":"Watkins","year":"2006","journal-title":"J Intellect Disabil Res"},{"key":"2025121510504041000_6.11.e012993.51","doi-asserted-by":"publisher","DOI":"10.1016\/S1059-1311(02)00265-0"},{"key":"2025121510504041000_6.11.e012993.52","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2011.01527.x"},{"key":"2025121510504041000_6.11.e012993.53","doi-asserted-by":"publisher","DOI":"10.1186\/1741-7015-8-1"},{"key":"2025121510504041000_6.11.e012993.54","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.a1655"},{"key":"2025121510504041000_6.11.e012993.55","unstructured":"Ring H , Irvine F , Donaldson C , et al . Clinical trial protocol\u2014improving outcomes in adults with epilepsy and intellectual disability: a cluster randomised controlled trial of nurse-led epilepsy management (EpAID). 2014. http:\/\/www.nets.nihr.ac.uk\/__data\/assets\/pdf_file\/0014\/81131\/PRO-10-104-16.pdf"},{"key":"2025121510504041000_6.11.e012993.56","first-page":"3","article-title":"The ME (My epilepsy) Project: an active learning approach for people with learning disabilities and epilepsy","volume":"2","author":"Codling","year":"2010","journal-title":"Epilepsy Care"},{"key":"2025121510504041000_6.11.e012993.57","doi-asserted-by":"crossref","first-page":"492","DOI":"10.1053\/seiz.2001.0537","article-title":"Adults with learning disabilities and epilepsy: knowledge about epilepsy before and after an educational package","volume":"10","author":"Clark","year":"2001","journal-title":"Seizure"},{"key":"2025121510504041000_6.11.e012993.58","doi-asserted-by":"crossref","first-page":"10","DOI":"10.7748\/ldp.10.5.10.s12","article-title":"The PEPE project","volume":"10","author":"Kushinga","year":"2007","journal-title":"Learn Disabil Pract"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2016-012993","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T18:50:53Z","timestamp":1765824653000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2016-012993"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,11]]},"references-count":58,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2016,11,10]]},"published-print":{"date-parts":[[2016,11]]}},"alternative-id":["10.1136\/bmjopen-2016-012993"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2016-012993","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,11]]}}}