{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,24]],"date-time":"2026-10-24T23:46:30Z","timestamp":1792885590612,"version":"4.5.0"},"reference-count":50,"publisher":"BMJ","issue":"1","license":[{"start":{"date-parts":[[2025,1,22]],"date-time":"2025-01-22T00:00:00Z","timestamp":1737504000000},"content-version":"unspecified","delay-in-days":21,"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":["NIHR203981"],"award-info":[{"award-number":["NIHR203981"]}],"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":[[2025,1,2]]},"published-print":{"date-parts":[[2025,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Explore the nature and prevalence of long-term conditions in individuals with intellectual disability.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Retrospective longitudinal population-based study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databank.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>14 323 individuals were identified during the study date period 1 January 2000 to 31 December 2021 using the following inclusion criteria: 18 or older, alive at the cohort start date, a resident of Wales, with a primary care registration at a SAIL providing general practice with available records and a recorded diagnosis of intellectual disability. Once individuals were identified, health records were observed from birth.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>13 069 individuals had a recorded diagnosis of intellectual disability and at least one long-term condition, reflecting 91.25% of the population. Demographic data from the SAIL dataset reveal that the study population is predominantly White, with low levels of representation of non-White ethnic groups. In the cohort, a larger proportion of patients live in the most deprived areas of Wales (22.30%), with fewer individuals in less deprived categories. Mental illness was identified as the most prevalent of the identified long-term conditions, whereby 30.91% of the population had a recorded diagnosis of a mental illness which was chronic. For many common conditions, including epilepsy, thyroid disorders, upper gastrointestinal disorders, chronic kidney disease and diabetes, there was an overall trend of higher prevalence rates in the intellectual disability cohort when compared with the general population. The prevalence of hypertension was lower in individuals with intellectual disability. Chronic constipation, chronic diarrhoea and insomnia were examples of long-term conditions added as relevant to individuals with intellectual disability. Notable differences in the distribution of long-term conditions were observed when comparing across sex and age groups. The number of long-term conditions increases with age. Conditions which may usually be expected to emerge later in life are present in younger age groups, such as diabetes, hypertension and chronic arthritis. When hospital episodes were analysed, epilepsy, diabetes, chronic airway disease and mental illness were commonly treated conditions during hospital admission across both sexes. Conditions which were less prevalent in the intellectual disability cohort, but which were treated during \u22656% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This study establishes a range of 40 relevant long-term conditions for people with intellectual disability through an iterative process, which included a review of the available literature and a series of discussions with a Professional Advisory Panel and Patient and Public Involvement groups of this research project. The findings of the study reinforce the high prevalence and early emergence of long-term conditions in the intellectual disability cohort. It also demonstrates the difference in the range of conditions when compared with the general population. There were differences in long-term conditions when separated by sex and age. Long-term conditions which commonly require treatment in hospitals were also revealed. Further work is required to translate the findings of this study into actionable insights. Clusters of multiple long-term conditions, trajectories, outcomes and risk factors should be explored to optimise the understanding and longitudinal care of individuals with intellectual disabilities and long-term conditions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2024-090857","type":"journal-article","created":{"date-parts":[[2025,1,22]],"date-time":"2025-01-22T22:42:24Z","timestamp":1737585744000},"page":"e090857","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":10,"title":["Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study"],"prefix":"10.1136","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0303-7840","authenticated-orcid":false,"given":"Gemma","family":"Lewin","sequence":"first","affiliation":[{"name":"Leicestershire Partnership NHS Trust, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rania","family":"Kousovista","sequence":"additional","affiliation":[{"name":"Department of Computer Science, Loughborough University, Loughborough, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emeka","family":"Abakasanga","sequence":"additional","affiliation":[{"name":"Department of Computer Science, Loughborough University, Loughborough, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rishika","family":"Shivamurthy","sequence":"additional","affiliation":[{"name":"Leicester Centre for Mental Health Research, Leicestershire Partnership NHS Trust, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georgina","family":"Cosma","sequence":"additional","affiliation":[{"name":"Department of Computer Science, Loughborough University, Loughborough, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gyuchan","family":"Jun","sequence":"additional","affiliation":[{"name":"Loughborough University Loughborough School of Design and Creative Arts, Loughborough, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Navjot","family":"Kaur","sequence":"additional","affiliation":[{"name":"Loughborough University Loughborough School of Design and Creative Arts, Loughborough, UK"},{"name":"Leicester Real World Evidence Unit, Diabetes Research Centre, University of Leicester, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0814-0801","authenticated-orcid":false,"given":"Ashley","family":"Akbari","sequence":"additional","affiliation":[{"name":"Swansea University Medical School, Swansea, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Satheesh","family":"Gangadharan","sequence":"additional","affiliation":[{"name":"Leicestershire Partnership NHS Trust, Leicester, UK"},{"name":"Loughborough University Loughborough School of Design and Creative Arts, Loughborough, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2025,1,22]]},"reference":[{"key":"2025121402560635000_15.1.e090857.1","doi-asserted-by":"crossref","first-page":"339","DOI":"10.1146\/annurev-clinpsy-081219-090532","article-title":"Developmental Perspectives on the Study of Persons with Intellectual Disability","volume":"17","author":"Burack","year":"2021","journal-title":"Annu Rev Clin Psychol"},{"key":"2025121402560635000_15.1.e090857.2","doi-asserted-by":"crossref","first-page":"54","DOI":"10.1192\/bji.2021.6","article-title":"Setting priorities for people with intellectual disability\/intellectual developmental disorders across the lifespan: a call to action by the World Psychiatric Association","volume":"18","author":"Roy","year":"2021","journal-title":"BJPsych Int"},{"key":"2025121402560635000_15.1.e090857.3","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2010.12.018"},{"key":"2025121402560635000_15.1.e090857.4","unstructured":"National Institute for Health and Care Excellence (NICE) . NICE Clinical Knowledge Summaries: Multimorbidity. 2023. Available: https:\/\/cks.nice.org.uk\/topics\/multimorbidity\/#:~:text=Multimorbidity%20is%20the%20presence%20of,as%20frailty%20or%20chronic%20pain"},{"key":"2025121402560635000_15.1.e090857.5","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2017-018292","article-title":"Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study","volume":"8","author":"Kinnear","year":"2018","journal-title":"BMJ Open"},{"key":"2025121402560635000_15.1.e090857.6","doi-asserted-by":"crossref","DOI":"10.1186\/s12875-015-0329-3","article-title":"Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis","volume":"16","author":"Cooper","year":"2015","journal-title":"BMC Fam Pract"},{"key":"2025121402560635000_15.1.e090857.7","doi-asserted-by":"crossref","DOI":"10.3399\/bjgp18X697313","article-title":"The Learning Disabilities Mortality Review (LeDeR) programme","volume":"68","author":"Heslop","year":"2018","journal-title":"Br J Gen Pract"},{"key":"2025121402560635000_15.1.e090857.8","doi-asserted-by":"crossref","first-page":"834","DOI":"10.1111\/jir.12775","article-title":"Polypharmacy and psychotropic polypharmacy in adults with intellectual disability: a cross-sectional total population study","volume":"64","author":"McMahon","year":"2020","journal-title":"J Intellect Disabil Res"},{"key":"2025121402560635000_15.1.e090857.9","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12067"},{"key":"2025121402560635000_15.1.e090857.10","doi-asserted-by":"crossref","DOI":"10.1192\/bjo.2024.12","article-title":"Chronic constipation in people with intellectual disabilities in the community: cross-sectional study","volume":"10","author":"Laugharne","year":"2024","journal-title":"BJPsych Open"},{"key":"2025121402560635000_15.1.e090857.11","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2010.05.003"},{"key":"2025121402560635000_15.1.e090857.12","doi-asserted-by":"crossref","first-page":"1045","DOI":"10.1177\/17446295221107275","article-title":"A scoping review of clusters of multiple long-term conditions in people with intellectual disabilities and factors impacting on outcomes for this patient group","volume":"27","author":"Mann","year":"2023","journal-title":"J Intellect Disabil"},{"key":"2025121402560635000_15.1.e090857.13","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3310\/hsdr05250","article-title":"An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database","volume":"5","author":"Carey","year":"2017","journal-title":"Health Serv Deliv Res"},{"key":"2025121402560635000_15.1.e090857.14","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-9-3","article-title":"The SAIL databank: linking multiple health and social care datasets","volume":"9","author":"Lyons","year":"2009","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121402560635000_15.1.e090857.15","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2014.01.003"},{"key":"2025121402560635000_15.1.e090857.16","doi-asserted-by":"crossref","DOI":"10.1136\/bmjmed-2022-000247","article-title":"Measuring multimorbidity in research: Delphi consensus study","volume":"1","author":"Ho","year":"2022","journal-title":"BMJ Med"},{"key":"2025121402560635000_15.1.e090857.17","doi-asserted-by":"crossref","first-page":"7B","DOI":"10.1155\/2011\/593056","article-title":"What is chronic constipation? Definition and diagnosis","volume":"25 Suppl B","author":"Gray","year":"2011","journal-title":"Can J Gastroenterol"},{"key":"2025121402560635000_15.1.e090857.18","unstructured":"National Institute of Neurological Disorders and Stroke . Back Pain, 2023. Available: https:\/\/www.ninds.nih.gov\/health-information\/disorders\/back-pain"},{"key":"2025121402560635000_15.1.e090857.19","first-page":"1119","article-title":"Evaluation of chronic diarrhea","volume":"84","author":"Juckett","year":"2011","journal-title":"Am Fam Physician"},{"key":"2025121402560635000_15.1.e090857.20","unstructured":"Descoteaux-Friday GJ , StatPearls SI . Chronic diarrhea. Treasure Island, FL: StatPearls Publishing, 2025. Available: https:\/\/pubmed.ncbi.nlm.nih.gov\/31335057\/"},{"key":"2025121402560635000_15.1.e090857.21","first-page":"282","article-title":"Chronic and recurrent pneumonia","volume":"7","author":"Geppert","year":"1992","journal-title":"Semin Respir Infect"},{"key":"2025121402560635000_15.1.e090857.22","doi-asserted-by":"crossref","first-page":"411","DOI":"10.1007\/s40737-023-00369-w","article-title":"Developing a Patient and Public Involvement Training Course for People with Intellectual Disabilities: The Leicestershire Experience","volume":"10","author":"Tromans","year":"2023","journal-title":"J Psychosoc Rehabil Ment Health"},{"key":"2025121402560635000_15.1.e090857.23","unstructured":"WIMD indicator data from 2019, 2019. Available: https:\/\/statswales.gov.wales\/Catalogue\/Community-Safety-and-Social-Inclusion\/Welsh-Index-of-Multiple-Deprivation\/WIMD-2019"},{"key":"2025121402560635000_15.1.e090857.24","unstructured":"Office for National Statistics . Office for National Statistics. UK Health Indicators, 2022. Available: https:\/\/www.ons.gov.uk\/peoplepopulationandcommunity\/healthandsocialcare\/healthandlifeexpectancies\/bulletins\/ukhealthindicators\/2019to2020"},{"key":"2025121402560635000_15.1.e090857.25","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000003509"},{"key":"2025121402560635000_15.1.e090857.26","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2013-2409"},{"key":"2025121402560635000_15.1.e090857.27","unstructured":"National Institute of Mental Health . Mental Illness, 2022. Available: https:\/\/www.nimh.nih.gov\/health\/statistics\/mental-illness#part_2539"},{"key":"2025121402560635000_15.1.e090857.28","unstructured":"Centers for Disease Control and Prevention . National diabetes statistics report. 2023. Available: https:\/\/www.cdc.gov\/diabetes\/data\/statistics-report\/index.html"},{"key":"2025121402560635000_15.1.e090857.29","doi-asserted-by":"crossref","first-page":"897","DOI":"10.1111\/dme.12494","article-title":"Diabetes in people with an intellectual disability: a systematic review of prevalence, incidence and impact","volume":"31","author":"McVilly","year":"2014","journal-title":"Diabet Med"},{"key":"2025121402560635000_15.1.e090857.30","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0158765","article-title":"Global Prevalence of Chronic Kidney Disease - A Systematic Review and Meta-Analysis","volume":"11","author":"Hill","year":"2016","journal-title":"PLoS One"},{"key":"2025121402560635000_15.1.e090857.31","doi-asserted-by":"publisher","DOI":"10.1016\/j.kisu.2021.11.003"},{"key":"2025121402560635000_15.1.e090857.32","doi-asserted-by":"crossref","first-page":"726","DOI":"10.1016\/j.ridd.2013.11.005","article-title":"Chronic kidney disease in older people with intellectual disability: results of the HA-ID study","volume":"35","author":"de Winter","year":"2014","journal-title":"Res Dev Disabil"},{"key":"2025121402560635000_15.1.e090857.33","unstructured":"Office for Health Improvements and Disparities . Respiratory Disease. 2023. Available: https:\/\/fingertips.phe.org.uk\/profile\/respiratory-disease#:~:text=Respiratory%20disease%20affects%20one%20in,cause%20of%20death%20in%20England"},{"key":"2025121402560635000_15.1.e090857.34","doi-asserted-by":"crossref","first-page":"40","DOI":"10.3390\/healthcare5030040","article-title":"Chronic Respiratory Disorders and Their Treatment among Older People with Intellectual Disability and\/or Autism Spectrum Disorder in Comparison with the General Population","volume":"5","author":"Axmon","year":"2017","journal-title":"Healthcare (Basel)"},{"key":"2025121402560635000_15.1.e090857.35","unstructured":"NHS England . Learning from lives and deaths - People with a learning disability and autistic people (LeDeR): Action from learning report 2021\/22, 2022. Available: https:\/\/leder.nhs.uk\/images\/resources\/Action-From-Learning-Report-2021-22.pdf"},{"key":"2025121402560635000_15.1.e090857.36","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm7241a1"},{"key":"2025121402560635000_15.1.e090857.37","doi-asserted-by":"publisher","DOI":"10.1038\/s41581-019-0244-2"},{"key":"2025121402560635000_15.1.e090857.38","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-114.6.427"},{"key":"2025121402560635000_15.1.e090857.39","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2012.04.010"},{"key":"2025121402560635000_15.1.e090857.40","doi-asserted-by":"crossref","DOI":"10.1186\/s12939-016-0296-x","article-title":"The physical health of British adults with intellectual disability: cross sectional study","volume":"15","author":"Emerson","year":"2016","journal-title":"Int J Equity Health"},{"key":"2025121402560635000_15.1.e090857.41","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2008.01130.x"},{"key":"2025121402560635000_15.1.e090857.42","doi-asserted-by":"crossref","DOI":"10.1186\/s12877-017-0658-2","article-title":"Prevalence and treatment of diabetes mellitus and hypertension among older adults with intellectual disability in comparison with the general population","volume":"17","author":"Axmon","year":"2017","journal-title":"BMC Geriatr"},{"key":"2025121402560635000_15.1.e090857.43","doi-asserted-by":"publisher","DOI":"10.1007\/s00392-016-1025-6"},{"key":"2025121402560635000_15.1.e090857.44","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0275816","article-title":"Mapping of UK Biobank clinical codes: Challenges and possible solutions","volume":"17","author":"Stroganov","year":"2022","journal-title":"PLoS ONE"},{"key":"2025121402560635000_15.1.e090857.45","doi-asserted-by":"publisher","DOI":"10.1136\/jech-2021-216798"},{"key":"2025121402560635000_15.1.e090857.46","unstructured":"Welsh Government . Ethnic Group, National Identity, Language and Religion in Wales (Census 2021), 2022. Available: https:\/\/www.gov.wales\/ethnic-group-national-identity-language-and-religion-wales-census-2021-html"},{"key":"2025121402560635000_15.1.e090857.47","unstructured":"Statistical directorate the National Assembly for Wales . Statistical bulletin: 2001 Census of population: First results on ethnic groups and identity, 2003. Available: https:\/\/www.gov.wales\/sites\/default\/files\/statistics-and-research\/2019-03\/030319-2001-census-population-first-results-ethnic-groups-identity-en.pdf"},{"key":"2025121402560635000_15.1.e090857.48","doi-asserted-by":"crossref","DOI":"10.1038\/s41597-024-02958-1","article-title":"Ethnicity data resource in population-wide health records: completeness, coverage and granularity of diversity","volume":"11","author":"Pineda-Moncus\u00ed","year":"2024","journal-title":"Sci Data"},{"key":"2025121402560635000_15.1.e090857.49","unstructured":"The Nuffield Trust . Ethnicity coding in English health service datasets, 2021. Available: https:\/\/www.nuffieldtrust.org.uk\/research\/ethnicity-coding-in-english-health-service-datasets"},{"key":"2025121402560635000_15.1.e090857.50","unstructured":"UK Health Data Research Alliance Ethnicity Coding Standards Special Interest Group . Draft recommendations as of june 2023. 2023. Available: https:\/\/www.hdruk.ac.uk\/wp-content\/uploads\/2023\/06\/Draft-recommendations-ethnicity-standards-June-2023-V2.pdf"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2024-090857","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T10:56:17Z","timestamp":1765709777000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2024-090857"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1]]},"references-count":50,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1,22]]},"published-print":{"date-parts":[[2025,1]]}},"alternative-id":["10.1136\/bmjopen-2024-090857"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2024-090857","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1]]}}}