This paper examines clinical outcomes of an approach to referrals for concerns about severe behavioural distress in people with intellectual disabilities (ID) that is based on the concepts of emotional development (EDev) and attachment. Due to research and clinical experiences suggesting that positive behaviour support (PBS) may have limited long-term impact, an alternative approach is proposed, which focuses on relational factors and emotional skills already held by carers.
Methodology
We report the process and outcomes of a brief standardised assessment using the Scale of Emotional Development–Short (SED-S) which then informed an attachment-based workshop. Outcomes were measured by way of the Health of the Nation Outcome Scales–Learning Disabilities (HoNOS-LD) administered at (a) assessment, (b) following 1–2 intervention workshops and (c) at 6-month follow-up.
Results
Significantly fewer sessions and hours of clinical time were required for the EDev intervention than the prior PBS interventions. Results demonstrated significant improvements from assessment to post-intervention, which were maintained 6 months later. Almost half (48%) of the participants were referred while in unsettled accommodation arrangements.
Conclusions
This study provides initial evidence supporting an approach that shows promise as an alternative to existing models of care based upon applied behaviour analysis. Future well-controlled studies across multiple sites are needed, but if these findings are replicated, the priority for intervention may shift from reduction in behavioural risks to robust care relationships which meet the person's emotional needs.
{"title":"Outcomes of an Intervention Programme for People With Intellectual Disabilities and Behavioural Concerns Based on Emotional Development","authors":"Allan Skelly, Jade Wigham, Mark Hudson","doi":"10.1111/jir.70008","DOIUrl":"10.1111/jir.70008","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This paper examines clinical outcomes of an approach to referrals for concerns about severe behavioural distress in people with intellectual disabilities (ID) that is based on the concepts of emotional development (EDev) and attachment. Due to research and clinical experiences suggesting that positive behaviour support (PBS) may have limited long-term impact, an alternative approach is proposed, which focuses on relational factors and emotional skills already held by carers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methodology</h3>\u0000 \u0000 <p>We report the process and outcomes of a brief standardised assessment using the Scale of Emotional Development–Short (SED-S) which then informed an attachment-based workshop. Outcomes were measured by way of the Health of the Nation Outcome Scales–Learning Disabilities (HoNOS-LD) administered at (a) assessment, (b) following 1–2 intervention workshops and (c) at 6-month follow-up.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Significantly fewer sessions and hours of clinical time were required for the EDev intervention than the prior PBS interventions. Results demonstrated significant improvements from assessment to post-intervention, which were maintained 6 months later. Almost half (48%) of the participants were referred while in unsettled accommodation arrangements.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study provides initial evidence supporting an approach that shows promise as an alternative to existing models of care based upon applied behaviour analysis. Future well-controlled studies across multiple sites are needed, but if these findings are replicated, the priority for intervention may shift from reduction in behavioural risks to robust care relationships which meet the person's emotional needs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1097-1104"},"PeriodicalIF":2.0,"publicationDate":"2025-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70008","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144584158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Amalia Udeanu, Gloria Garcia-Fernandez, Andrea Krotter, Juan Antonio García-Aller, Patricia Solis Garcia, Laura E. Gómez
Introduction
People with intellectual disability (ID) face increased vulnerability to addictive behaviours, yet effective interventions are under-researched. This study aimed to systematically review existing interventions for substance use and problem gambling in this population.
Methods
Following PRISMA guidelines, we searched Web of Science, PsycINFO and CENTRAL for studies on substance use or gambling tailored for people with ID. Two independent reviewers synthesised the data and assessed the methodological quality using established tools.
Results
Sixteen studies were included: three randomised controlled trials (RCTs), six non-randomised trials and seven case studies. Most studies involved small samples of male adults with mild ID, focusing on tobacco (n = 6), polydrug use (n = 5), alcohol (n = 3), opioids (n = 1) or gambling (n = 1). Mindfulness-based therapy and cognitive behavioural therapy combined with motivational interviewing showed promising results for reducing tobacco and alcohol use in people with ID. Short-term benefits were observed for alcohol and cannabis use, though impacts on severity were unclear. Psychoeducation was frequently integrated with behavioural techniques, contributing to reduced substance use through enhanced awareness and knowledge.
Conclusions
The evidence for interventions targeting substance use and gambling in individuals with ID remains limited. A meta-analysis was not possible due to insufficient data, though single-case designs provided valuable insights. More rigorous and comprehensive research is needed to better understand and improve intervention strategies for addressing substance use and gambling problems in people with ID.
{"title":"Substance Use and Problem Gambling Interventions for People With Intellectual Disability: A Systematic Review","authors":"Amalia Udeanu, Gloria Garcia-Fernandez, Andrea Krotter, Juan Antonio García-Aller, Patricia Solis Garcia, Laura E. Gómez","doi":"10.1111/jir.70007","DOIUrl":"10.1111/jir.70007","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>People with intellectual disability (ID) face increased vulnerability to addictive behaviours, yet effective interventions are under-researched. This study aimed to systematically review existing interventions for substance use and problem gambling in this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Following PRISMA guidelines, we searched Web of Science, PsycINFO and CENTRAL for studies on substance use or gambling tailored for people with ID. Two independent reviewers synthesised the data and assessed the methodological quality using established tools.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Sixteen studies were included: three randomised controlled trials (RCTs), six non-randomised trials and seven case studies. Most studies involved small samples of male adults with mild ID, focusing on tobacco (<i>n</i> = 6), polydrug use (<i>n</i> = 5), alcohol (<i>n</i> = 3), opioids (<i>n</i> = 1) or gambling (<i>n</i> = 1). Mindfulness-based therapy and cognitive behavioural therapy combined with motivational interviewing showed promising results for reducing tobacco and alcohol use in people with ID. Short-term benefits were observed for alcohol and cannabis use, though impacts on severity were unclear. Psychoeducation was frequently integrated with behavioural techniques, contributing to reduced substance use through enhanced awareness and knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The evidence for interventions targeting substance use and gambling in individuals with ID remains limited. A meta-analysis was not possible due to insufficient data, though single-case designs provided valuable insights. More rigorous and comprehensive research is needed to better understand and improve intervention strategies for addressing substance use and gambling problems in people with ID.</p>\u0000 \u0000 <p><b>Trial Registration:</b> PROSPERO CRD42023477296</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1154-1171"},"PeriodicalIF":2.0,"publicationDate":"2025-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70007","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144567524","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marleen J. de Leeuw, Mylène N. Böhmer, Patrick J. E. Bindels, Dederieke A. M. Maes-Festen, Alyt Oppewal
Background
Previous research has shown that older adults with intellectual disabilities are at increased risk of cardiovascular diseases (CVD). However, longitudinal studies investigating the actual incidence of CVD and its associated risk factors in this population are limited. Such research is essential for optimising healthcare delivery and informing effective resource allocation. Therefore, this study aimed to examine CVD incidence in older adults with intellectual disabilities and explore its associations with participant characteristics and risk factors.
Method
A prospective longitudinal study was conducted in older adults (≥ 50 years) with intellectual disabilities as part of the Healthy Ageing and Intellectual Disabilities study. Baseline measurements were performed in 2009–2010, with follow-up assessments, including medical record reviews, in 2020–2023. Incidence rates for myocardial infarction (MI), heart failure (HF) and stroke were calculated by sex and 10-year age categories. Competing risk analysis was performed to examine the associations between CVD diagnoses during follow-up and baseline participant characteristics/CVD risk factors, accounting for mortality as a competing risk.
Results
Among 598 participants (62.0 ± 8.5 year; 49.3% female), with a mean follow-up of 8.6 years, incidence rates were 2.3 per 1000 person years for MI, 7.2 for HF, and 5.3 for stroke. Hypertension (HR 3.17; p < 0.001), Down syndrome (HR 2.66; p < 0.01) and antipsychotic use (HR 1.98; p = 0.04) were associated with an increased CVD risk during follow-up.
Conclusions
A lower incidence of MI and similar to higher incidence of HF and stroke were found in older adults with intellectual disabilities than in the general population. Further research, including a focus on the association of CVD incidence with Down syndrome, is needed. Meanwhile, proactive assessment and management of CVD risk factors, such as hypertension and antipsychotic use, are important for improving cardiovascular health in older adults with intellectual disabilities.
{"title":"Cardiovascular Disease Incidence and Risk Factors in Older Adults With Intellectual Disabilities: Results of the Healthy Ageing and Intellectual Disabilities Study","authors":"Marleen J. de Leeuw, Mylène N. Böhmer, Patrick J. E. Bindels, Dederieke A. M. Maes-Festen, Alyt Oppewal","doi":"10.1111/jir.70004","DOIUrl":"10.1111/jir.70004","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Previous research has shown that older adults with intellectual disabilities are at increased risk of cardiovascular diseases (CVD). However, longitudinal studies investigating the actual incidence of CVD and its associated risk factors in this population are limited. Such research is essential for optimising healthcare delivery and informing effective resource allocation. Therefore, this study aimed to examine CVD incidence in older adults with intellectual disabilities and explore its associations with participant characteristics and risk factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A prospective longitudinal study was conducted in older adults (≥ 50 years) with intellectual disabilities as part of the Healthy Ageing and Intellectual Disabilities study. Baseline measurements were performed in 2009–2010, with follow-up assessments, including medical record reviews, in 2020–2023. Incidence rates for myocardial infarction (MI), heart failure (HF) and stroke were calculated by sex and 10-year age categories. Competing risk analysis was performed to examine the associations between CVD diagnoses during follow-up and baseline participant characteristics/CVD risk factors, accounting for mortality as a competing risk.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Among 598 participants (62.0 ± 8.5 year; 49.3% female), with a mean follow-up of 8.6 years, incidence rates were 2.3 per 1000 person years for MI, 7.2 for HF, and 5.3 for stroke. Hypertension (HR 3.17; <i>p</i> < 0.001), Down syndrome (HR 2.66; <i>p</i> < 0.01) and antipsychotic use (HR 1.98; <i>p</i> = 0.04) were associated with an increased CVD risk during follow-up.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>A lower incidence of MI and similar to higher incidence of HF and stroke were found in older adults with intellectual disabilities than in the general population. Further research, including a focus on the association of CVD incidence with Down syndrome, is needed. Meanwhile, proactive assessment and management of CVD risk factors, such as hypertension and antipsychotic use, are important for improving cardiovascular health in older adults with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1261-1271"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70004","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144540513","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Atiyya Nisar, Paul A. Thompson, Harm Boer, Haider Al-Delfi, Peter E. Langdon
Background
In 2015, the Building the Right Support programme was launched for England in an attempt to reduce the number of psychiatric inpatients with intellectual disabilities and/or autism by 35%–50%. This target, and subsequent targets, were missed, and for 2025–2026, the government further committed to reducing numbers by 10%. Considering these continued targets, we aimed to investigate psychiatric bed utilisation over time, and to further understand factors that may influence psychiatric admissions and discharges of people with intellectual disabilities and/or autism, by utilising time series modelling with national English data to explore the relationship between a set of chosen sociodemographic, clinical and service-related predictor variables and the following outcome variables: (1) total monthly number of hospital spells, (2) total monthly number of discharges, (3) total monthly number of admissions, (4) ratio of community to non-community discharges, (5) number of inpatients with a length of stay under 2 years, (6) number of patients with a length of stay over 2 years and (7) total number of distinct individuals who had been subjected to restraints.
Methods
Using data from the publicly available Mental Health Services Data set, we utilised linear regression (with moving average or auto-regressive errors) to examine the relationships between variables over time, from February 2013 to January 2024.
Results
Over time, the number of inpatients decreased by an average of 4.55 patients per month. The number of inpatients with a length of stay greater than 2 years reduced over time. Periods of time when the number of inpatients was greater were associated with more inpatients under the age of 18 years. Periods of time when hospital stays, admissions and discharges were higher were associated with fewer White inpatients relative to non-White inpatients. Periods of time with more patients detained under Part II of the Mental Health Act were associated with more admissions and the increased use of restraint.
Conclusions
Over the last 11 years, the planned closure of psychiatric inpatient beds has been unsuccessful. Our findings indicated that periods of increased psychiatric bed utilisation were associated with more admissions of younger people, non-White inpatients and those likely to be experiencing a crisis. Future research should explore how psychiatric beds can be utilised more effectively alongside co
{"title":"Factors Affecting Psychiatric Bed Utilisation by People With Intellectual Disabilities: A Time Series Analysis Using the English National Mental Health Services Data Set","authors":"Atiyya Nisar, Paul A. Thompson, Harm Boer, Haider Al-Delfi, Peter E. Langdon","doi":"10.1111/jir.70003","DOIUrl":"10.1111/jir.70003","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>In 2015, the Building the Right Support programme was launched for England in an attempt to reduce the number of psychiatric inpatients with intellectual disabilities and/or autism by 35%–50%. This target, and subsequent targets, were missed, and for 2025–2026, the government further committed to reducing numbers by 10%. Considering these continued targets, we aimed to investigate psychiatric bed utilisation over time, and to further understand factors that may influence psychiatric admissions and discharges of people with intellectual disabilities and/or autism, by utilising time series modelling with national English data to explore the relationship between a set of chosen sociodemographic, clinical and service-related predictor variables and the following outcome variables: (1) total monthly number of hospital spells, (2) total monthly number of discharges, (3) total monthly number of admissions, (4) ratio of community to non-community discharges, (5) number of inpatients with a length of stay under 2 years, (6) number of patients with a length of stay over 2 years and (7) total number of distinct individuals who had been subjected to restraints.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using data from the publicly available Mental Health Services Data set, we utilised linear regression (with moving average or auto-regressive errors) to examine the relationships between variables over time, from February 2013 to January 2024.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Over time, the number of inpatients decreased by an average of 4.55 patients per month. The number of inpatients with a length of stay greater than 2 years reduced over time. Periods of time when the number of inpatients was greater were associated with more inpatients under the age of 18 years. Periods of time when hospital stays, admissions and discharges were higher were associated with fewer White inpatients relative to non-White inpatients. Periods of time with more patients detained under Part II of the Mental Health Act were associated with more admissions and the increased use of restraint.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Over the last 11 years, the planned closure of psychiatric inpatient beds has been unsuccessful. Our findings indicated that periods of increased psychiatric bed utilisation were associated with more admissions of younger people, non-White inpatients and those likely to be experiencing a crisis. Future research should explore how psychiatric beds can be utilised more effectively alongside co","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1251-1260"},"PeriodicalIF":2.0,"publicationDate":"2025-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70003","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144368981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Atiyya Nisar, Paul A. Thompson, Harm Boer, Haider Al-Delfi, Peter E. Langdon
Background
Using nationally available anonymised and aggregated English data, we examined specialist and nonspecialist psychiatric bed utilisation by people with intellectual disabilities and/or autism.
Methods
Using data about specialist psychiatric bed utilisation from the Assuring Transformation Dataset, from March 2015 to January 2024, we applied linear regression (with moving average or autoregressive errors) to explore the relationships between a set of outcome variables (e.g., number of inpatients and length of stay) and a set of sociodemographic, clinical and service-related predictor variables (e.g., age, ethnicity, admission source, legal status, admission source, discharge destination, Care (Education) and Treatment Reviews) over time. Comparisons were made with data from the Mental Health Services Data Set about nonspecialist psychiatric bed utilisation.
Results
Over time, there was an average reduction of 8.07 inpatients per month. This reduction was due to a reduction in the number with a length of stay longer than 2 years, and fewer inpatients with intellectual disabilities without autism over time, rather than fewer autistic inpatients without intellectual disabilities; instead, the number of autistic inpatients increased by 6.02 per month. However, overall, there were fewer inpatients in specialist psychiatric beds than in nonspecialist beds by an average of 877 patients, and the number in specialist beds reduced faster than the number in nonspecialist beds over time. We found that more hospital spells were associated with more inpatients older than 18, more detentions under Part III of the Mental Health Act, more inpatients not known to the local authority, and an increased number of White inpatients. More admissions were associated with fewer discharges, while those with a hospital stay longer than 2 years were less likely to have had a postadmission Care (Education) and Treatment Reviews and were more likely to use advocacy.
Conclusions
The number of inpatients with intellectual disabilities in specialist psychiatric beds continues to decline over time, while the number of autistic inpatients without intellectual disabilities is increasing. Future research should utilise participant-level data to explore patient long-term trajectories.
{"title":"Specialist Psychiatric Bed Utilisation by People With Intellectual Disabilities and Autistic People: A Time-Series Analysis Using the English Assuring Transformation Dataset","authors":"Atiyya Nisar, Paul A. Thompson, Harm Boer, Haider Al-Delfi, Peter E. Langdon","doi":"10.1111/jir.70001","DOIUrl":"10.1111/jir.70001","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Using nationally available anonymised and aggregated English data, we examined specialist and nonspecialist psychiatric bed utilisation by people with intellectual disabilities and/or autism.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using data about specialist psychiatric bed utilisation from the Assuring Transformation Dataset, from March 2015 to January 2024, we applied linear regression (with moving average or autoregressive errors) to explore the relationships between a set of outcome variables (e.g., number of inpatients and length of stay) and a set of sociodemographic, clinical and service-related predictor variables (e.g., age, ethnicity, admission source, legal status, admission source, discharge destination, Care (Education) and Treatment Reviews) over time. Comparisons were made with data from the Mental Health Services Data Set about nonspecialist psychiatric bed utilisation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Over time, there was an average reduction of 8.07 inpatients per month. This reduction was due to a reduction in the number with a length of stay longer than 2 years, and fewer inpatients with intellectual disabilities without autism over time, rather than fewer autistic inpatients without intellectual disabilities; instead, the number of autistic inpatients increased by 6.02 per month. However, overall, there were fewer inpatients in specialist psychiatric beds than in nonspecialist beds by an average of 877 patients, and the number in specialist beds reduced faster than the number in nonspecialist beds over time. We found that more hospital spells were associated with more inpatients older than 18, more detentions under Part III of the Mental Health Act, more inpatients not known to the local authority, and an increased number of White inpatients. More admissions were associated with fewer discharges, while those with a hospital stay longer than 2 years were less likely to have had a postadmission Care (Education) and Treatment Reviews and were more likely to use advocacy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The number of inpatients with intellectual disabilities in specialist psychiatric beds continues to decline over time, while the number of autistic inpatients without intellectual disabilities is increasing. Future research should utilise participant-level data to explore patient long-term trajectories.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1224-1236"},"PeriodicalIF":2.0,"publicationDate":"2025-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144284939","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lachlan Stranks, Mohammad Abdulsalam, David O'Regan, Joerg Steier, Alanna Hare
Background
Adults with intellectual disabilities (IDs) face significant health inequalities and reduced life expectancy compared to the general population. Sleep disorders, including obstructive sleep apnoea (OSA), are highly prevalent in this population; however, standard diagnostic modalities may be poorly tolerated and many people may remain undiagnosed. The aim of this study was to assess the feasibility of using an acoustic-derived home-based sleep study to diagnose OSA in adults with ID who were unable to tolerate standard inpatient or home sleep studies.
Method
This was a prospective feasibility study (GSTT/2024/15803). Participants were identified from two tertiary outpatient sleep departments in London, UK. Eligible participants were aged ≥ 17 years with a diagnosed ID. Inpatient or existing home studies had not been tolerated or had been declined. Participants wore a small diagnostic sensor, the AcuPebble SA100 (Acurable Ltd., London, UK) for one to two nights in their own home. Baseline symptom screening and quality of life questionnaires were administered. Semiqualitative and qualitative feedback was obtained from participants. The primary outcome was successful completion of testing, defined as ≥ 240 min of recording on at least one night. Quantitative diagnostic parameters were reviewed in a multidisciplinary team (MDT) meeting to formulate a management plan. Data are presented as mean (standard deviation), unless otherwise specified.
Results
Seventeen people were screened, and 10 agreed to participate in the study (3F/7M). Eight participants (80%) successfully completed testing (2F/6M, 4 severe ID, age 29.7 [15.4] years, body mass index, BMI 27.1 [5.9] kg/m2, apnoea hypopnoea index, median AHI 5.5 [IQR 7.8] ev/h). Of these, five participants (63%) were found to have OSA. Feedback was favourable with an average total satisfaction score of 14.0 (4.8) out of 20 points.
Conclusion
In a cohort of participants with ID who were unable to tolerate standard sleep diagnostics to assess OSA, an acoustic-derived home-based sleep study may provide a solution to achieve clinically diagnostic recordings.
{"title":"Acoustics-Derived Home-Based Sleep Study for the Diagnosis of Obstructive Sleep Apnoea in Adults With Intellectual Disabilities: A Feasibility Study","authors":"Lachlan Stranks, Mohammad Abdulsalam, David O'Regan, Joerg Steier, Alanna Hare","doi":"10.1111/jir.70000","DOIUrl":"10.1111/jir.70000","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disabilities (IDs) face significant health inequalities and reduced life expectancy compared to the general population. Sleep disorders, including obstructive sleep apnoea (OSA), are highly prevalent in this population; however, standard diagnostic modalities may be poorly tolerated and many people may remain undiagnosed. The aim of this study was to assess the feasibility of using an acoustic-derived home-based sleep study to diagnose OSA in adults with ID who were unable to tolerate standard inpatient or home sleep studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This was a prospective feasibility study (GSTT/2024/15803). Participants were identified from two tertiary outpatient sleep departments in London, UK. Eligible participants were aged ≥ 17 years with a diagnosed ID. Inpatient or existing home studies had not been tolerated or had been declined. Participants wore a small diagnostic sensor, the AcuPebble SA100 (Acurable Ltd., London, UK) for one to two nights in their own home. Baseline symptom screening and quality of life questionnaires were administered. Semiqualitative and qualitative feedback was obtained from participants. The primary outcome was successful completion of testing, defined as ≥ 240 min of recording on at least one night. Quantitative diagnostic parameters were reviewed in a multidisciplinary team (MDT) meeting to formulate a management plan. Data are presented as mean (standard deviation), unless otherwise specified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Seventeen people were screened, and 10 agreed to participate in the study (3F/7M). Eight participants (80%) successfully completed testing (2F/6M, 4 severe ID, age 29.7 [15.4] years, body mass index, BMI 27.1 [5.9] kg/m<sup>2</sup>, apnoea hypopnoea index, median AHI 5.5 [IQR 7.8] ev/h). Of these, five participants (63%) were found to have OSA. Feedback was favourable with an average total satisfaction score of 14.0 (4.8) out of 20 points.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>In a cohort of participants with ID who were unable to tolerate standard sleep diagnostics to assess OSA, an acoustic-derived home-based sleep study may provide a solution to achieve clinically diagnostic recordings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1215-1223"},"PeriodicalIF":2.0,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144266434","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Luis Iglesias-Díaz, Susana López-Ortiz, Celia García-Chico, Alejandro Santos-Lozano, Javier González-Lázaro
Background
People with Down syndrome (DS) may exhibit several musculoskeletal disorders, including alterations in muscle tone and activation. Strength training could mitigate the loss of muscle strength and, therefore, improve strength values in this population. Additionally, it may influence health-related outcomes such as physical function, body composition and biochemical markers.
Objective
This systematic review and meta-analysis of randomised controlled trials (RCTs) aimed to analyse the characteristics and effects of strength training in people with DS.
Methods
A search was conducted from inception to 22 April 2025. The methodological quality of the included RCTs was assessed using the 15-item Tool for the assEssment of Study qualiTy and reporting in EXercise (TESTEX). In addition, the risk of bias was assessed using the Cochrane's risk of bias 2 (RoB2).
Results
A total of 10 RCTs (n = 233 participants) were included in the systematic review, of which three (n = 111 participants) could be meta-analysed. The pooled effect showed statistically significant benefits for upper (mean difference [MD] = 5.66 kg, 95% CI 2.42–8.91) and lower (MD = 20.43 kg, 95% CI 1.76–39.10) body strength. The TESTEX scores for most RCTs ranged from 3 to 12 points. The risk of bias analysis indicated that eight RCTs had a low risk of bias, whereas the remaining studies were classified as high risk.
Conclusion
Strength training may significantly improve muscle strength in people with DS. However, further research is needed to assess the long-term effects on physical function, body composition and biochemical markers.
背景：唐氏综合征（DS）患者可能表现出几种肌肉骨骼疾病，包括肌肉张力和激活的改变。力量训练可以减轻肌肉力量的损失，从而提高该人群的力量值。此外，它还可能影响与健康相关的结果，如身体功能、身体成分和生化指标。目的：对随机对照试验（RCTs）进行系统回顾和荟萃分析，旨在分析退行性椎体滑移患者力量训练的特点和效果。方法：从开始到2025年4月22日进行检索。采用15项研究质量评估工具（TESTEX）评估纳入的随机对照试验的方法学质量。此外，采用Cochrane's risk of bias 2 （RoB2）评估偏倚风险。结果：系统评价共纳入10项rct （n = 233名受试者），其中3项（n = 111名受试者）可进行meta分析。综合效应显示，较高（平均差异[MD] = 5.66 kg, 95% CI 2.42-8.91）和较低（MD = 20.43 kg, 95% CI 1.76-39.10）的身体力量有统计学意义的益处。大多数随机对照试验的TESTEX分数在3到12分之间。偏倚风险分析显示，8项rct为低偏倚风险，其余研究为高风险。结论：力量训练可显著提高退行性椎体滑移患者的肌力。然而，需要进一步的研究来评估对身体功能、身体成分和生化指标的长期影响。
{"title":"Lifting Limits: The Impact of Strength Training in Down Syndrome—A Systematic Review and Meta-Analysis","authors":"Luis Iglesias-Díaz, Susana López-Ortiz, Celia García-Chico, Alejandro Santos-Lozano, Javier González-Lázaro","doi":"10.1111/jir.13259","DOIUrl":"10.1111/jir.13259","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with Down syndrome (DS) may exhibit several musculoskeletal disorders, including alterations in muscle tone and activation. Strength training could mitigate the loss of muscle strength and, therefore, improve strength values in this population. Additionally, it may influence health-related outcomes such as physical function, body composition and biochemical markers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>This systematic review and meta-analysis of randomised controlled trials (RCTs) aimed to analyse the characteristics and effects of strength training in people with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A search was conducted from inception to 22 April 2025. The methodological quality of the included RCTs was assessed using the 15-item Tool for the assEssment of Study qualiTy and reporting in EXercise (TESTEX). In addition, the risk of bias was assessed using the Cochrane's risk of bias 2 (RoB2).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 10 RCTs (<i>n</i> = 233 participants) were included in the systematic review, of which three (<i>n</i> = 111 participants) could be meta-analysed. The pooled effect showed statistically significant benefits for upper (mean difference [MD] = 5.66 kg, 95% CI 2.42–8.91) and lower (MD = 20.43 kg, 95% CI 1.76–39.10) body strength. The TESTEX scores for most RCTs ranged from 3 to 12 points. The risk of bias analysis indicated that eight RCTs had a low risk of bias, whereas the remaining studies were classified as high risk.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Strength training may significantly improve muscle strength in people with DS. However, further research is needed to assess the long-term effects on physical function, body composition and biochemical markers.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 9","pages":"781-794"},"PeriodicalIF":2.0,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13259","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144258214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Francis Hickey, Liz Maastricht, Kristine Wolter-Warmerdam, Dee Daniels, Bailey Herfindahl, Karen Kelminson
Background
Children with Down syndrome (DS) have an increased frequency of co-occurring medical complications compared to the typically developing population; however, incidence rates of co-occurring medical conditions in a large paediatric population-based study are limited. The goal of this study was to further investigate the frequencies of concomitant medical conditions, as well as newborn complications in children with DS.
Methods
This is a retrospective, large cohort review of children with DS (n = 2321) receiving care at a referral centre specialising in DS to identify common patterns of co-occurring conditions in children and young adults with DS. Participants from birth to 24 years of age received care from the Anna and John J. Sie Center for Down Syndrome at Children's Hopsital Colorado, which serves 88% of the State of Colorado’s paediatric population with DS. Records reviewed included demographics, birth history, and medical conditions of each patient.
Results
Neonatal complications requiring admission to the neonatal intensive care unit (NICU) were present in 80.0% of the population. Complications leading to these admissions include oxygen requirement (53.7%), feeding problems (49.7%), respiratory distress syndrome (14.7%), and persistent pulmonary hypertension of the newborn (12.6%). Incidence of medical complications for children and young adults with DS includes obstructive sleep apnea (56.8%), cardiac defect requiring surgical repair (48.9%), feeding problems (42.3%), and dysphagia (26.2%). Recently identified co-occurring conditions lacking in the literature, such as keratoconus (3.6%) and Wolff–Parkinson–White syndrome (3.4%), are also reported. Testing, labs and procedures were also common amongst children to meet American Academy of Pediatrics (AAP) DS Guidelines.
Conclusion
Children with DS have unique phenotypic clinical patterns of co-occurring conditions and medical complications. Some conditions present clinically in the neonatal period and require close monitoring and anticipation for a higher level of care for newborns with DS. Our results, using a large sample of over 2300 patients, provide information to improve evidence-based early identification and timely intervention for children and young adults with DS.
{"title":"Co-Occurring Medical Conditions in Over 2300 Children With Down Syndrome at a Down Syndrome Multispecialty Clinic","authors":"Francis Hickey, Liz Maastricht, Kristine Wolter-Warmerdam, Dee Daniels, Bailey Herfindahl, Karen Kelminson","doi":"10.1111/jir.13257","DOIUrl":"10.1111/jir.13257","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with Down syndrome (DS) have an increased frequency of co-occurring medical complications compared to the typically developing population; however, incidence rates of co-occurring medical conditions in a large paediatric population-based study are limited. The goal of this study was to further investigate the frequencies of concomitant medical conditions, as well as newborn complications in children with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This is a retrospective, large cohort review of children with DS (<i>n</i> = 2321) receiving care at a referral centre specialising in DS to identify common patterns of co-occurring conditions in children and young adults with DS. Participants from birth to 24 years of age received care from the Anna and John J. Sie Center for Down Syndrome at Children's Hopsital Colorado, which serves 88% of the State of Colorado’s paediatric population with DS. Records reviewed included demographics, birth history, and medical conditions of each patient.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Neonatal complications requiring admission to the neonatal intensive care unit (NICU) were present in 80.0% of the population. Complications leading to these admissions include oxygen requirement (53.7%), feeding problems (49.7%), respiratory distress syndrome (14.7%), and persistent pulmonary hypertension of the newborn (12.6%). Incidence of medical complications for children and young adults with DS includes obstructive sleep apnea (56.8%), cardiac defect requiring surgical repair (48.9%), feeding problems (42.3%), and dysphagia (26.2%). Recently identified co-occurring conditions lacking in the literature, such as keratoconus (3.6%) and Wolff–Parkinson–White syndrome (3.4%), are also reported. Testing, labs and procedures were also common amongst children to meet American Academy of Pediatrics (AAP) DS Guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Children with DS have unique phenotypic clinical patterns of co-occurring conditions and medical complications. Some conditions present clinically in the neonatal period and require close monitoring and anticipation for a higher level of care for newborns with DS. Our results, using a large sample of over 2300 patients, provide information to improve evidence-based early identification and timely intervention for children and young adults with DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 8","pages":"711-720"},"PeriodicalIF":2.1,"publicationDate":"2025-06-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144216082","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Maria Louise Dieudonnée Hoekstra-van Duijn, Maureen Bernardina Gerardus Wissing, Patrick Jan Eugène Bindels, Dederieke Anne Maria Maes-Festen
Background
People with intellectual disabilities often use psychotropic medications. Recognising side effects in this population can be challenging while they can negatively impact the quality of life. An accurate screening instrument is crucial to identify side effects of psychotropic medication in people with intellectual disabilities. For this purpose, the Matson Evaluation of Drug Side Effects (MEDS) is the most reliable and well-researched instrument. We translated the MEDS into Dutch, considering that the Dutch version of the MEDS must be accurate and aligned with its intended meaning, avoiding multiple interpretations; this study aimed to assess its intrarater and interrater reliabilities in people with intellectual disabilities using psychotropic medication.
Methods
A certified medical translation agency performed translation and back-translation of the MEDS. Two researchers administered the MEDS three times on the same day. Participants were people with intellectual disabilities using psychotropic medication. Demographic and medical data were collected via questionnaires. Scoring and calculation of total domain scores, severity domain scores, duration domain scores and composite scale scores followed the MEDS manual. Intraclass correlation coefficients (ICC) and 95% confidence intervals of these scores were used to assess intrarater and interrater reliabilities.
Results
The study sample included 40 adults with intellectual disabilities. Intrarater reliability was good to excellent for total domain scores (ICCs ranging from 0.873 to 1.000) and excellent for the total composite scale score (ICC = 0.945). Interrater reliability was moderate to excellent for total domain scores (ICCs ranging from 0.713 to 0.922) and good for the total composite scale score (ICC = 0.894).
Conclusions
This study demonstrated moderate to excellent intrarater and interrater reliabilities for the Dutch version of the MEDS. This confirms its potential as a valuable instrument for clinicians to identify and monitor side effects in people with intellectual disabilities using psychotropic medication. We recommend the use of the Dutch version of the MEDS in both Dutch clinical practice and research for this purpose.
{"title":"Reliability of the Dutch Version of the Matson Evaluation of Drug Side Effects in People With Intellectual Disabilities","authors":"Maria Louise Dieudonnée Hoekstra-van Duijn, Maureen Bernardina Gerardus Wissing, Patrick Jan Eugène Bindels, Dederieke Anne Maria Maes-Festen","doi":"10.1111/jir.13256","DOIUrl":"10.1111/jir.13256","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities often use psychotropic medications. Recognising side effects in this population can be challenging while they can negatively impact the quality of life. An accurate screening instrument is crucial to identify side effects of psychotropic medication in people with intellectual disabilities. For this purpose, the Matson Evaluation of Drug Side Effects (MEDS) is the most reliable and well-researched instrument. We translated the MEDS into Dutch, considering that the Dutch version of the MEDS must be accurate and aligned with its intended meaning, avoiding multiple interpretations; this study aimed to assess its intrarater and interrater reliabilities in people with intellectual disabilities using psychotropic medication.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A certified medical translation agency performed translation and back-translation of the MEDS. Two researchers administered the MEDS three times on the same day. Participants were people with intellectual disabilities using psychotropic medication. Demographic and medical data were collected via questionnaires. Scoring and calculation of total domain scores, severity domain scores, duration domain scores and composite scale scores followed the MEDS manual. Intraclass correlation coefficients (ICC) and 95% confidence intervals of these scores were used to assess intrarater and interrater reliabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The study sample included 40 adults with intellectual disabilities. Intrarater reliability was good to excellent for total domain scores (ICCs ranging from 0.873 to 1.000) and excellent for the total composite scale score (ICC = 0.945). Interrater reliability was moderate to excellent for total domain scores (ICCs ranging from 0.713 to 0.922) and good for the total composite scale score (ICC = 0.894).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study demonstrated moderate to excellent intrarater and interrater reliabilities for the Dutch version of the MEDS. This confirms its potential as a valuable instrument for clinicians to identify and monitor side effects in people with intellectual disabilities using psychotropic medication. We recommend the use of the Dutch version of the MEDS in both Dutch clinical practice and research for this purpose.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 8","pages":"703-710"},"PeriodicalIF":2.1,"publicationDate":"2025-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13256","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144191898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marleen J. de Leeuw, Thessa I. M. Hilgenkamp, Dederieke A. M. Maes-Festen, Patrick J. E. Bindels, Roy G. Elbers, Alyt Oppewal
<div> <section> <h3> Background</h3> <p>Given the high risk of cardiovascular diseases (CVD) in adults with intellectual disabilities (ID), there is a strong need for accurate understanding on CVD prevalence and incidence in this population. This information is important to ensure optimal care and resource allocation. However, systematic reviews on this topic are limited. Therefore, this systematic review aimed to provide a comprehensive synthesis of studies on the prevalence and incidence of CVD in adults with ID, including subgroup data.</p> </section> <section> <h3> Method</h3> <p>We performed a systematic search in Embase, Medline ALL, Web of Science, Cochrane Central, PsycINFO and Google Scholar up to 21 January 2025, including peer-reviewed articles on CVD prevalence or incidence in adults with ID. Article screening and data extraction were independently performed by two researchers. Data were synthesised by CVD diagnosis. When available, data were reported separately for different subgroups. The methodological quality was assessed by two independent researchers. This review followed the PRISMA guidelines.</p> </section> <section> <h3> Results</h3> <p>In 55 articles, prevalence and incidence rates were identified for coronary artery disease (prev 0%–12.9%; inc 2.0–2.8 per 1000py), myocardial infarction (prev 0%–7.9%; inc 0.3–2.8 per 1000py), heart failure (prev 0.8%–18.6%; inc 12.5 per 1000py), cerebrovascular disease (prev 0.7%–15.0%; inc 2.55 per 1000py), stroke (prev 1.3%–17.2%; inc 2.7–3.2 per 1000py), peripheral arterial disease (prev 0.4%–20.7%; inc 1.1 per 1000py), venous thrombosis (prev 0.6%–12.4%; inc 0.8–4.1 per 1000py) and atrial fibrillation (prev 0.8%–6.3%). Subgroup data have been reported based on age, sex, level of ID, aetiology of ID, living circumstances, CVD risk factors, data collection methods and source populations. Overall, higher prevalence and incidence rates were reported in older people and in studies that used physical measurements for diagnosis.</p> </section> <section> <h3> Conclusions</h3> <p>Due to variability in methodological quality, clinical characteristics and high statistical heterogeneity, drawing conclusions about CVD prevalence and incidence in adults with ID is challenging. Therefore, the subgroup data presented in this review are valuable for identifying rates within specific subgroups. Longitudinal studies along with research employing valid and reliable data collection methods (preferably objective measurements) aligned with studies in the general population, clear reporting of individual CVD diag
{"title":"Prevalence and Incidence of Cardiovascular Disease in Adults With Intellectual Disabilities: A Systematic Review","authors":"Marleen J. de Leeuw, Thessa I. M. Hilgenkamp, Dederieke A. M. Maes-Festen, Patrick J. E. Bindels, Roy G. Elbers, Alyt Oppewal","doi":"10.1111/jir.13254","DOIUrl":"10.1111/jir.13254","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Given the high risk of cardiovascular diseases (CVD) in adults with intellectual disabilities (ID), there is a strong need for accurate understanding on CVD prevalence and incidence in this population. This information is important to ensure optimal care and resource allocation. However, systematic reviews on this topic are limited. Therefore, this systematic review aimed to provide a comprehensive synthesis of studies on the prevalence and incidence of CVD in adults with ID, including subgroup data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We performed a systematic search in Embase, Medline ALL, Web of Science, Cochrane Central, PsycINFO and Google Scholar up to 21 January 2025, including peer-reviewed articles on CVD prevalence or incidence in adults with ID. Article screening and data extraction were independently performed by two researchers. Data were synthesised by CVD diagnosis. When available, data were reported separately for different subgroups. The methodological quality was assessed by two independent researchers. This review followed the PRISMA guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In 55 articles, prevalence and incidence rates were identified for coronary artery disease (prev 0%–12.9%; inc 2.0–2.8 per 1000py), myocardial infarction (prev 0%–7.9%; inc 0.3–2.8 per 1000py), heart failure (prev 0.8%–18.6%; inc 12.5 per 1000py), cerebrovascular disease (prev 0.7%–15.0%; inc 2.55 per 1000py), stroke (prev 1.3%–17.2%; inc 2.7–3.2 per 1000py), peripheral arterial disease (prev 0.4%–20.7%; inc 1.1 per 1000py), venous thrombosis (prev 0.6%–12.4%; inc 0.8–4.1 per 1000py) and atrial fibrillation (prev 0.8%–6.3%). Subgroup data have been reported based on age, sex, level of ID, aetiology of ID, living circumstances, CVD risk factors, data collection methods and source populations. Overall, higher prevalence and incidence rates were reported in older people and in studies that used physical measurements for diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Due to variability in methodological quality, clinical characteristics and high statistical heterogeneity, drawing conclusions about CVD prevalence and incidence in adults with ID is challenging. Therefore, the subgroup data presented in this review are valuable for identifying rates within specific subgroups. Longitudinal studies along with research employing valid and reliable data collection methods (preferably objective measurements) aligned with studies in the general population, clear reporting of individual CVD diag","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1337-1369"},"PeriodicalIF":2.0,"publicationDate":"2025-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13254","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144158199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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