{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T17:37:12Z","timestamp":1786988232284,"version":"build-2736575974"},"reference-count":53,"publisher":"Public Library of Science (PLoS)","issue":"8","license":[{"start":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T00:00:00Z","timestamp":1786924800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"NHS England"},{"name":"NHS England"},{"name":"NHS England"}],"content-domain":{"domain":["www.plosmedicine.org"],"crossmark-restriction":false},"short-container-title":["PLoS Med"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Adults with intellectual disabilities experience significantly worse health outcomes and die younger than people without intellectual disability. People with severe or profound intellectual disability have particularly complex health needs. However, no large-scale population-based studies have specifically examined mortality patterns and factors associated with age at death in this group.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods and findings<\/jats:title>\n                    <jats:p>\n                      This population-based study used data from the English Learning from Lives and Deaths (LeDeR) mortality review programme and the Office for National Statistics (ONS) between 2021 and 2023. We included 1,301 adults with severe or profound intellectual disability, 2,626 adults with mild or moderate intellectual disability, and 536,311 adults from the general population. We collected sociodemographic, clinical, and mortality data. Key outcomes included co-occurring conditions, age at death, causes of death, avoidable mortality, and years of life lost. We used Cox regression and multiple linear regression to examine factors associated with age at death. We defined avoidable deaths as deaths before the age of 75 years due to preventable or treatable causes and adjudicated them by mapping the underlying cause of death to the Organisation for Economic Co-operation and Development (OECD) list of avoidable causes of death. Adults with severe or profound intellectual disability had a significantly higher prevalence of dysphagia (63.0%), epilepsy (36.1%) and visual problems (35.9%) compared with those with mild or moderate intellectual disability (\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u20090.01 for each). The median age at death was markedly lower in this group (57.9 years) compared to those with mild or moderate intellectual disability (65.0 years) and the general population (81.9 years) (\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u20090.001). We classified two-fifths of deaths among adults with severe or profound intellectual disability as avoidable (39.5%), resulting in 15,059.4 years of life lost. Severe or profound intellectual disability was associated with a younger age at death (adjusted mean difference \u22127.17 years; 95% confidence interval [CI] [\u22128.16, \u22126.18];\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u20090.001). A key limitation is that the cohort was restricted to mortality data, meaning our findings reflect factors associated with age at death rather than mortality risk.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Our findings highlight the urgent need for tailored public health strategies, early interventions, and integrated care models to improve clinical outcomes for individuals with severe and profound intellectual disability.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pmed.1005029","type":"journal-article","created":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T17:23:20Z","timestamp":1786987400000},"page":"e1005029","update-policy":"https:\/\/doi.org\/10.1371\/journal.pmed.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Avoidable mortality, clinical outcomes and determinants of premature death among adults with severe or profound intellectual disability: A population-based analysis of mortality data in England"],"prefix":"10.1371","volume":"23","author":[{"given":"Michael Kwan Leung","family":"Yu","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4164-9661","authenticated-orcid":true,"given":"Rory","family":"Sheehan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas","family":"Magill","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-5456-7523","authenticated-orcid":true,"given":"Adam","family":"White","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-4160-4401","authenticated-orcid":true,"given":"Lili","family":"Bokor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6738-2862","authenticated-orcid":true,"given":"Jonathon","family":"Ding","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7288-9529","authenticated-orcid":true,"given":"Irene","family":"Tuffrey-Wijne","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0747-591X","authenticated-orcid":true,"given":"Umesh","family":"Chauhan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-7287-5654","authenticated-orcid":true,"given":"Andr\u00e9","family":"Strydom","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,8,17]]},"reference":[{"key":"pmed.1005029.ref001","volume-title":"Diagnostic and statistical manual of mental disorders","author":"F Edition","year":"2013"},{"key":"pmed.1005029.ref002","volume-title":"The ICD-10 classification of mental and behavioural disorders","author":"WHO","year":"1992"},{"issue":"2","key":"pmed.1005029.ref003","doi-asserted-by":"crossref","first-page":"419","DOI":"10.1016\/j.ridd.2010.12.018","article-title":"Prevalence of intellectual disability: a meta-analysis of population-based studies","volume":"32","author":"PK Maulik","year":"2011","journal-title":"Res Dev Disabil"},{"key":"pmed.1005029.ref004","author":"Mencap","year":"2025"},{"issue":"1","key":"pmed.1005029.ref005","doi-asserted-by":"crossref","first-page":"62","DOI":"10.1111\/jir.12314","article-title":"Mortality in people with intellectual disabilities in England","volume":"61","author":"G Glover","year":"2017","journal-title":"J Intellect Disabil Res"},{"key":"pmed.1005029.ref006","volume-title":"Kaplan and Sadock\u2019s Comprehensive Textbook of Psychiatry","author":"BJ Sadock","year":"2017"},{"issue":"6","key":"pmed.1005029.ref007","doi-asserted-by":"crossref","first-page":"432","DOI":"10.1016\/S2352-4642(22)00067-0","article-title":"Mental health problems in children with intellectual disability","volume":"6","author":"V Totsika","year":"2022","journal-title":"Lancet Child Adolesc Health"},{"key":"pmed.1005029.ref008","doi-asserted-by":"crossref","first-page":"28","DOI":"10.1016\/j.ridd.2017.05.002","article-title":"Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities","volume":"67","author":"EA van Timmeren","year":"2017","journal-title":"Res Dev Disabil"},{"issue":"17","key":"pmed.1005029.ref009","doi-asserted-by":"crossref","first-page":"1512","DOI":"10.1212\/WNL.0000000000002060","article-title":"Delivery of epilepsy care to adults with intellectual and developmental disabilities","volume":"85","author":"O Devinsky","year":"2015","journal-title":"Neurology"},{"key":"pmed.1005029.ref010","doi-asserted-by":"crossref","first-page":"17446295241267085","DOI":"10.1177\/17446295241267085","article-title":"Constipation prevalence and risk from prescribed medications in people with intellectual disability: findings from an English mortality programme","author":"C Roberts","year":"2024","journal-title":"J Intellect Disabil"},{"key":"pmed.1005029.ref011","doi-asserted-by":"crossref","first-page":"209","DOI":"10.1016\/j.pmedr.2016.06.008","article-title":"Physical activity levels in adults with intellectual disabilities: a systematic review","volume":"4","author":"YM Dairo","year":"2016","journal-title":"Prev Med Rep"},{"issue":"8","key":"pmed.1005029.ref012","doi-asserted-by":"crossref","first-page":"1483","DOI":"10.2105\/AJPH.2016.303240","article-title":"Mortality among adults with intellectual disability in england: comparisons with the general population","volume":"106","author":"FJ Hosking","year":"2016","journal-title":"Am J Public Health"},{"issue":"2","key":"pmed.1005029.ref013","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2024-089962","article-title":"Rates, causes and predictors of all-cause and avoidable mortality in 514\u2009878 adults with and without intellectual disabilities in Scotland: a record linkage national cohort study","volume":"15","author":"E Rydzewska","year":"2025","journal-title":"BMJ Open"},{"issue":"9920","key":"pmed.1005029.ref014","doi-asserted-by":"crossref","first-page":"889","DOI":"10.1016\/S0140-6736(13)62026-7","article-title":"The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study","volume":"383","author":"P Heslop","year":"2014","journal-title":"Lancet"},{"key":"pmed.1005029.ref015","author":"A White","year":"2025"},{"key":"pmed.1005029.ref016","author":"Disparities Office for Health Improvement &","year":"2021"},{"key":"pmed.1005029.ref017","author":"Office for National Statistics"},{"key":"pmed.1005029.ref018","unstructured":"Ministry of Housing, Communities & Local Government. The English Indices of Deprivation 2019 (IoD2019). 2019."},{"key":"pmed.1005029.ref019","author":"Organisation for Economic Cooperation and Development","year":"2022"},{"key":"pmed.1005029.ref020","volume-title":"Office for National Statistics","author":"Mortality statistics - underlying cause, sex and age","year":"2025"},{"key":"pmed.1005029.ref021","unstructured":"OfN. National life tables: England; 2024."},{"issue":"4","key":"pmed.1005029.ref022","doi-asserted-by":"crossref","first-page":"1367","DOI":"10.1093\/ije\/dyy254","article-title":"Reflection on modern methods: years of life lost due to premature mortality-a versatile and comprehensive measure for monitoring non-communicable disease mortality","volume":"48","author":"R Martinez","year":"2019","journal-title":"Int J Epidemiol"},{"key":"pmed.1005029.ref023","author":"Australian Government Department of Health, Disability and Ageing","year":"2025"},{"issue":"8","key":"pmed.1005029.ref024","article-title":"Advancing health policy and outcomes for people with intellectual or developmental disabilities: a community-led agenda","volume":"5","author":"HH Pham","year":"2024","journal-title":"JAMA Health Forum"},{"issue":"3","key":"pmed.1005029.ref025","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1004117","article-title":"Recording of intellectual disability in general hospitals in England 2006-2019: cohort study using linked datasets","volume":"20","author":"R Sheehan","year":"2023","journal-title":"PLoS Med"},{"issue":"4","key":"pmed.1005029.ref026","doi-asserted-by":"crossref","first-page":"501","DOI":"10.1093\/fampra\/cmac135","article-title":"Comparing the number and length of primary care consultations in people with and without intellectual disabilities and health needs: observational cohort study using electronic health records","volume":"41","author":"F Tyrer","year":"2024","journal-title":"Fam Pract"},{"issue":"1","key":"pmed.1005029.ref027","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1007\/s00431-024-05876-x","article-title":"Health problems in children with profound intellectual and multiple disabilities: a scoping review","volume":"184","author":"LM Zandbelt","year":"2024","journal-title":"Eur J Pediatr"},{"issue":"5","key":"pmed.1005029.ref028","doi-asserted-by":"crossref","first-page":"934","DOI":"10.1161\/HYPERTENSIONAHA.113.01445","article-title":"Longitudinal trajectories of arterial stiffness and the role of blood pressure: the Baltimore Longitudinal Study of Aging","volume":"62","author":"M AlGhatrif","year":"2013","journal-title":"Hypertension"},{"key":"pmed.1005029.ref029","article-title":"Management of diabetes mellitus in older people with comorbidities","volume":"353","author":"ES Huang","year":"2016","journal-title":"BMJ"},{"issue":"22","key":"pmed.1005029.ref030","doi-asserted-by":"crossref","first-page":"2349","DOI":"10.1001\/jama.2012.16817","article-title":"Age and association of kidney measures with mortality and end-stage renal disease","volume":"308","author":"SI Hallan","year":"2012","journal-title":"JAMA"},{"key":"pmed.1005029.ref031","doi-asserted-by":"crossref","first-page":"108355","DOI":"10.1016\/j.yebeh.2021.108355","article-title":"People with epilepsy and intellectual disability: More than a sum of two conditions","volume":"124","author":"FM Snoeijen-Schouwenaars","year":"2021","journal-title":"Epilepsy Behav"},{"issue":"1","key":"pmed.1005029.ref032","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1007\/s00455-008-9153-4","article-title":"People with a learning disability and dysphagia: a cinderella population?","volume":"24","author":"P Leslie","year":"2009","journal-title":"Dysphagia"},{"issue":"3","key":"pmed.1005029.ref033","doi-asserted-by":"crossref","first-page":"228","DOI":"10.1111\/jir.12243","article-title":"Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives","volume":"60","author":"NMJ Kuijken","year":"2016","journal-title":"J Intellect Disabil Res"},{"key":"pmed.1005029.ref034","doi-asserted-by":"crossref","first-page":"100060","DOI":"10.1016\/j.fhj.2024.100060","article-title":"Developing the role of the Learning Disability Physician","volume":"11","author":"K Courtenay","year":"2024","journal-title":"Future Healthcare Journal"},{"issue":"4","key":"pmed.1005029.ref035","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1108\/13595474199800032","article-title":"Primary health care and health gain for people with a learning disability","volume":"3","author":"M Kerr","year":"1998","journal-title":"Tizard Learning Disability Rev"},{"issue":"6","key":"pmed.1005029.ref036","doi-asserted-by":"crossref","first-page":"493","DOI":"10.1111\/j.1468-3148.2007.00401.x","article-title":"The prevalence, incidence, and factors predictive of mental ill\u2010health in adults with profound intellectual disabilities","volume":"20","author":"S Cooper","year":"2007","journal-title":"Research Intellect Disabil"},{"issue":"1","key":"pmed.1005029.ref037","doi-asserted-by":"crossref","DOI":"10.1111\/jar.13315","article-title":"Mental health services for adults with intellectual disabilities: a qualitative study of patient characteristics, associated factors and consequent needs for adaptation in assessment and treatment","volume":"38","author":"K Karlsen","year":"2025","journal-title":"J Appl Res Intellect Disabil"},{"issue":"1","key":"pmed.1005029.ref038","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1016\/j.ejpsy.2021.10.002","article-title":"The European guideline on the assessment and diagnosis of psychiatric disorders in adults with intellectual disabilities","volume":"36","author":"S Deb","year":"2022","journal-title":"The European Journal of Psychiatry"},{"issue":"7","key":"pmed.1005029.ref039","doi-asserted-by":"crossref","first-page":"522","DOI":"10.1016\/S2215-0366(14)00079-0","article-title":"Assessment of an incentivised scheme to provide annual health checks in primary care for adults with intellectual disability: a longitudinal cohort study","volume":"1","author":"M Buszewicz","year":"2014","journal-title":"Lancet Psychiatry"},{"issue":"6","key":"pmed.1005029.ref040","doi-asserted-by":"crossref","first-page":"1412","DOI":"10.1111\/jar.12623","article-title":"\u201cReasonable adjustments\u201d under the UK's Equality Act 2010: An enquiry into the care and treatment to patients with intellectual disabilities in acute hospital settings","volume":"32","author":"M Redley","year":"2019","journal-title":"Journal of Applied Research in Intellectual Disabilities"},{"key":"pmed.1005029.ref041","doi-asserted-by":"crossref","first-page":"432","DOI":"10.1186\/1472-6963-14-432","article-title":"The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study","volume":"14","author":"I Tuffrey-Wijne","year":"2014","journal-title":"BMC Health Serv Res"},{"issue":"2","key":"pmed.1005029.ref042","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1177\/17446295231154102","article-title":"Mortality patterns in a Danish nationwide cohort of persons with intellectual disabilities","volume":"28","author":"LC Thygesen","year":"2024","journal-title":"J Intellect Disabil"},{"issue":"2","key":"pmed.1005029.ref043","doi-asserted-by":"crossref","DOI":"10.1002\/brb3.431","article-title":"Mortality in individuals with intellectual disabilities in Finland","volume":"6","author":"M Arvio","year":"2016","journal-title":"Brain Behav"},{"issue":"1","key":"pmed.1005029.ref044","doi-asserted-by":"crossref","first-page":"909","DOI":"10.1186\/s12864-021-08227-4","article-title":"Intellectual disability genomics: current state, pitfalls and future challenges","volume":"22","author":"N Maia","year":"2021","journal-title":"BMC Genomics"},{"issue":"2","key":"pmed.1005029.ref045","doi-asserted-by":"crossref","first-page":"170","DOI":"10.1136\/adc.2005.088070","article-title":"Neurological disorders presenting mainly in adolescence","volume":"92","author":"S Macleod","year":"2007","journal-title":"Arch Dis Child"},{"key":"pmed.1005029.ref046","year":"2022"},{"key":"pmed.1005029.ref047","doi-asserted-by":"crossref","unstructured":"Osborn DP, Horsfall L, Hassiotis A, Petersen I, Walters K, Nazareth I. Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database. 2012.","DOI":"10.1371\/journal.pone.0043841"},{"key":"pmed.1005029.ref048","unstructured":"England N, House W. Do not attempt cardiopulmonary resuscitation (DNACPR) and people with a learning disability and or autism. 2023."},{"key":"pmed.1005029.ref049","author":"K Umpleby","year":"2023"},{"issue":"1","key":"pmed.1005029.ref050","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1111\/bld.12174","article-title":"Using photovoice to include people with profound and multiple learning disabilities in inclusive research","volume":"45","author":"V Cluley","year":"2016","journal-title":"Brit J Learn Disabil"},{"issue":"1","key":"pmed.1005029.ref051","doi-asserted-by":"crossref","first-page":"487","DOI":"10.1186\/s13063-017-2239-2","article-title":"POWERS forID: personalized online weight and exercise response system for individuals with intellectual disability: study protocol for a randomized controlled trial","volume":"18","author":"WH Neumeier","year":"2017","journal-title":"Trials"},{"issue":"2","key":"pmed.1005029.ref052","doi-asserted-by":"crossref","first-page":"151","DOI":"10.11613\/BM.2012.018","article-title":"Analysis of censored data","volume":"22","author":"M Lucijanic","year":"2012","journal-title":"Biochem Med (Zagreb)"},{"key":"pmed.1005029.ref053","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1016\/j.genhosppsych.2023.12.009","article-title":"Proactive and integrated consultation-liaison psychiatry for older medical inpatients: a mixed methods description of training, care provided and clinician experience in the HOME study","volume":"86","author":"M Sharpe","year":"2024","journal-title":"Gen Hosp Psychiatry"}],"container-title":["PLOS Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pmed.1005029","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T17:23:27Z","timestamp":1786987407000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pmed.1005029"}},"subtitle":[],"editor":[{"given":"Carol","family":"Brayne","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,8,17]]},"references-count":53,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2026,8,17]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pmed.1005029","relation":{},"ISSN":["1549-1676"],"issn-type":[{"value":"1549-1676","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,17]]}}}