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Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study

Gemma Lewin Orcid Logo, Rania Kousovista, Emeka Abakasanga, Rishika Shivamurthy, Georgina Cosma, Gyuchan Jun, Navjot Kaur, Ashley Akbari Orcid Logo, Satheesh Gangadharan

BMJ Open, Volume: 15, Issue: 1, Start page: e090857

Swansea University Author: Ashley Akbari Orcid Logo

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DOI (Published version): 10.1136/bmjopen-2024-090857

Abstract

Objective Explore the nature and prevalence of long-term conditions in individuals with intellectual disability.Design Retrospective longitudinal population-based study.Setting Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databa...

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Published in: BMJ Open
ISSN: 2044-6055 2044-6055
Published: BMJ 2025
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Once individuals were identified, health records were observed from birth.Results 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 &#x2265;6% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy.Conclusions 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.</abstract><type>Journal Article</type><journal>BMJ Open</journal><volume>15</volume><journalNumber>1</journalNumber><paginationStart>e090857</paginationStart><paginationEnd/><publisher>BMJ</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>2044-6055</issnPrint><issnElectronic>2044-6055</issnElectronic><keywords/><publishedDay>22</publishedDay><publishedMonth>1</publishedMonth><publishedYear>2025</publishedYear><publishedDate>2025-01-22</publishedDate><doi>10.1136/bmjopen-2024-090857</doi><url/><notes/><college>COLLEGE NANME</college><department>Medical School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>MEDS</DepartmentCode><institution>Swansea University</institution><apcterm/><funders>DECODE project is funded by the National Institute for Health and Care Research (NIHR) AI for Multiple Long- term Conditions (AIM) Programme. Award ID: NIHR203981.</funders><projectreference/><lastEdited>2025-02-27T16:05:20.9584439</lastEdited><Created>2025-01-25T19:57:58.4135885</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Gemma</firstname><surname>Lewin</surname><orcid>0000-0002-0303-7840</orcid><order>1</order></author><author><firstname>Rania</firstname><surname>Kousovista</surname><order>2</order></author><author><firstname>Emeka</firstname><surname>Abakasanga</surname><order>3</order></author><author><firstname>Rishika</firstname><surname>Shivamurthy</surname><order>4</order></author><author><firstname>Georgina</firstname><surname>Cosma</surname><order>5</order></author><author><firstname>Gyuchan</firstname><surname>Jun</surname><order>6</order></author><author><firstname>Navjot</firstname><surname>Kaur</surname><order>7</order></author><author><firstname>Ashley</firstname><surname>Akbari</surname><orcid>0000-0003-0814-0801</orcid><order>8</order></author><author><firstname>Satheesh</firstname><surname>Gangadharan</surname><order>9</order></author></authors><documents><document><filename>68739__33701__8f02ad6893eb48239cfc30dd52f6b1ed.pdf</filename><originalFilename>68739.VoR.pdf</originalFilename><uploaded>2025-02-27T15:59:45.6881395</uploaded><type>Output</type><contentLength>595030</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; Author(s) (or their employer(s)) 2025. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license.</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>https://creativecommons.org/licenses/by/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2025-02-27T16:05:20.9584439 v2 68739 2025-01-25 Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study aa1b025ec0243f708bb5eb0a93d6fb52 0000-0003-0814-0801 Ashley Akbari Ashley Akbari true false 2025-01-25 MEDS Objective Explore the nature and prevalence of long-term conditions in individuals with intellectual disability.Design Retrospective longitudinal population-based study.Setting Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databank.Participants 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.Results 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 ≥6% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy.Conclusions 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. Journal Article BMJ Open 15 1 e090857 BMJ 2044-6055 2044-6055 22 1 2025 2025-01-22 10.1136/bmjopen-2024-090857 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University DECODE project is funded by the National Institute for Health and Care Research (NIHR) AI for Multiple Long- term Conditions (AIM) Programme. Award ID: NIHR203981. 2025-02-27T16:05:20.9584439 2025-01-25T19:57:58.4135885 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Gemma Lewin 0000-0002-0303-7840 1 Rania Kousovista 2 Emeka Abakasanga 3 Rishika Shivamurthy 4 Georgina Cosma 5 Gyuchan Jun 6 Navjot Kaur 7 Ashley Akbari 0000-0003-0814-0801 8 Satheesh Gangadharan 9 68739__33701__8f02ad6893eb48239cfc30dd52f6b1ed.pdf 68739.VoR.pdf 2025-02-27T15:59:45.6881395 Output 595030 application/pdf Version of Record true © Author(s) (or their employer(s)) 2025. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license. true eng https://creativecommons.org/licenses/by/4.0/
title Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
spellingShingle Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
Ashley Akbari
title_short Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
title_full Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
title_fullStr Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
title_full_unstemmed Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
title_sort Nature and prevalence of long-term conditions in people with intellectual disability: retrospective longitudinal population-based study
author_id_str_mv aa1b025ec0243f708bb5eb0a93d6fb52
author_id_fullname_str_mv aa1b025ec0243f708bb5eb0a93d6fb52_***_Ashley Akbari
author Ashley Akbari
author2 Gemma Lewin
Rania Kousovista
Emeka Abakasanga
Rishika Shivamurthy
Georgina Cosma
Gyuchan Jun
Navjot Kaur
Ashley Akbari
Satheesh Gangadharan
format Journal article
container_title BMJ Open
container_volume 15
container_issue 1
container_start_page e090857
publishDate 2025
institution Swansea University
issn 2044-6055
2044-6055
doi_str_mv 10.1136/bmjopen-2024-090857
publisher BMJ
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str 1
active_str 0
description Objective Explore the nature and prevalence of long-term conditions in individuals with intellectual disability.Design Retrospective longitudinal population-based study.Setting Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databank.Participants 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.Results 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 ≥6% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy.Conclusions 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.
published_date 2025-01-22T17:47:29Z
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