Dementia is more prevalent and tends to manifest earlier in individuals with intellectual disabilities (ID) compared to the general population. Acquiring specific knowledge about comorbidities and diagnostic findings in individuals with ID who have dementia, as opposed to those with ID without dementia, is essential. Such insights are crucial for enhancing the quality of care.
Methods
The study was applied in a German outpatient clinic for people with ID and mental illnesses from February 2018 to September 2022. An exploratory comparison was conducted to identify differences in somatic and psychiatric comorbidities, laboratory results, cerebrospinal fluid results, neuroimaging, medication and challenging behaviour in people with ID with (n = 13, mean age: 54 years, 69% female) and without dementia (n = 73, mean age: 53 years, 48% female).
Results
In this sample, persons with ID who have dementia are more likely to have Down syndrome and less likely to have affective disorders. They received antidementia drugs more often and atypical high-potency antipsychotics less often compared to persons with ID without dementia. All other clinical data showed no differences.
Conclusions
Interestingly, no differences in somatic diseases (except Down syndrome) or laboratory and neuroimaging results could be found between people with ID with and without dementia. However, the diagnosis of dementia was associated with a reduced frequency of affective disorders and a reduced prescription of antipsychotics compared to the clinical sample without dementia. Due to the exploratory character of the study, replication in a much larger sample is necessary.
{"title":"Dementia in Intellectual Disability: An Exploratory Investigation of Comorbidity Patterns and Diagnostic Outcomes","authors":"Peer C. Keller, Tanja Sappok","doi":"10.1111/jir.70016","DOIUrl":"10.1111/jir.70016","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Dementia is more prevalent and tends to manifest earlier in individuals with intellectual disabilities (ID) compared to the general population. Acquiring specific knowledge about comorbidities and diagnostic findings in individuals with ID who have dementia, as opposed to those with ID without dementia, is essential. Such insights are crucial for enhancing the quality of care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study was applied in a German outpatient clinic for people with ID and mental illnesses from February 2018 to September 2022. An exploratory comparison was conducted to identify differences in somatic and psychiatric comorbidities, laboratory results, cerebrospinal fluid results, neuroimaging, medication and challenging behaviour in people with ID with (<i>n</i> = 13, mean age: 54 years, 69% female) and without dementia (<i>n</i> = 73, mean age: 53 years, 48% female).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In this sample, persons with ID who have dementia are more likely to have Down syndrome and less likely to have affective disorders. They received antidementia drugs more often and atypical high-potency antipsychotics less often compared to persons with ID without dementia. All other clinical data showed no differences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Interestingly, no differences in somatic diseases (except Down syndrome) or laboratory and neuroimaging results could be found between people with ID with and without dementia. However, the diagnosis of dementia was associated with a reduced frequency of affective disorders and a reduced prescription of antipsychotics compared to the clinical sample without dementia. Due to the exploratory character of the study, replication in a much larger sample is necessary.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1105-1113"},"PeriodicalIF":2.0,"publicationDate":"2025-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70016","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144957209","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}
People with intellectual disabilities can experience psychological distress and show behaviours of concern, such as self-injurious behaviour or physical aggression. One contributing factor is the degree to which their emotional needs are understood by those in their environment. This paper aims to review the psychometric properties of assessment tools measuring emotional development in individuals with intellectual disabilities.
Methods
A systematic literature review was conducted, which included 5 databases and followed the PRISMA guidance (registration number: CRD42024553322). Seven assessment tools were included in this review: the SAED, SED-S, Brief SED-S, SED-R, and SED-R2, SEO-Lukas and the Frankish model, and the psychometric properties were assessed in accordance with the COSMIN good measurement properties checklist.
Results
Sixteen studies were included in this review. Internal consistency was assessed in six of the seven measures; validity was only assessed in the SAED and SED-S. Whilst both of these measures were considered reliable and valid, studies on the SAED had greater methodological quality, and the SED-S had a larger quantity of evidence.
Conclusions
Both the SAED and the SED-S are psychometrically sound tools, based on the overall quality and sufficiency of the evidence. Further research should consider the usability, sensitivity and cross-cultural use, especially in UK populations.
{"title":"The Psychometric Properties of Emotional Development Assessment tools in Intellectual Disabilities: A Systematic Review","authors":"Bethany Leal, Mark Hudson","doi":"10.1111/jir.70023","DOIUrl":"10.1111/jir.70023","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities can experience psychological distress and show behaviours of concern, such as self-injurious behaviour or physical aggression. One contributing factor is the degree to which their emotional needs are understood by those in their environment. This paper aims to review the psychometric properties of assessment tools measuring emotional development in individuals with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A systematic literature review was conducted, which included 5 databases and followed the PRISMA guidance (registration number: CRD42024553322). Seven assessment tools were included in this review: the SAED, SED-S, Brief SED-S, SED-R, and SED-R<sup>2</sup>, SEO-Lukas and the Frankish model, and the psychometric properties were assessed in accordance with the COSMIN good measurement properties checklist.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Sixteen studies were included in this review. Internal consistency was assessed in six of the seven measures; validity was only assessed in the SAED and SED-S. Whilst both of these measures were considered reliable and valid, studies on the SAED had greater methodological quality, and the SED-S had a larger quantity of evidence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Both the SAED and the SED-S are psychometrically sound tools, based on the overall quality and sufficiency of the evidence. Further research should consider the usability, sensitivity and cross-cultural use, especially in UK populations.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1061-1080"},"PeriodicalIF":2.0,"publicationDate":"2025-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70023","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144835238","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}
Zackary F. Moore, Anna W. Wright, Carine E. Leslie, Allison D'Aguilar, Ananda B. Amstadter, Ruth C. Brown
Background
Children with intellectual disabilities (ID) experience disparities in mental health care despite experiencing increased exposure to trauma such as physical, emotional and sexual abuse. Studies have suggested that the exclusion of people with ID from medical research may contribute to disparities in health care. It is currently unknown to what extent children with ID are excluded from trauma treatment research.
Methods
All randomised controlled trials (RCTs) (n = 62) included in the most up-to-date International Society for Traumatic Stress Studies (ISTSS) clinical care guidelines meta-analysis of posttraumatic stress disorder (PTSD) treatments were reanalysed and coded to determine whether or not children with ID or other developmental disabilities that co-occur with ID were excluded based on inclusion/exclusion criteria. Articles were double-coded by the research team. The corresponding authors of the studies were asked to complete a survey rating the likelihood that children with ID would have been eligible for the study.
Results
Of the studies, 61.3% reviewed reported exclusion criteria based on a diagnosis of intellectual disability, cognitive impairment, autism spectrum disorder, organic/neurological conditions, or other related terms (e.g., ‘significant learning difficulties’). Operationalisation of exclusion criteria was sparse. Few studies reported the number of children excluded from trials based on an ID diagnosis.
Conclusions
The evidence base for the ISTSS clinical care guidelines of child PTSD treatment is not representative of children with ID. Improved documentation of inclusion/exclusion criteria, reporting of disability as a demographic characteristic, and inclusion of children with ID in PTSD treatment trials are needed to improve representation of children with ID in PTSD research.
{"title":"A Call for Inclusion: Children With Intellectual Disabilities in Trauma Treatment Research","authors":"Zackary F. Moore, Anna W. Wright, Carine E. Leslie, Allison D'Aguilar, Ananda B. Amstadter, Ruth C. Brown","doi":"10.1111/jir.70011","DOIUrl":"10.1111/jir.70011","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual disabilities (ID) experience disparities in mental health care despite experiencing increased exposure to trauma such as physical, emotional and sexual abuse. Studies have suggested that the exclusion of people with ID from medical research may contribute to disparities in health care. It is currently unknown to what extent children with ID are excluded from trauma treatment research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>All randomised controlled trials (RCTs) (<i>n</i> = 62) included in the most up-to-date International Society for Traumatic Stress Studies (ISTSS) clinical care guidelines meta-analysis of posttraumatic stress disorder (PTSD) treatments were reanalysed and coded to determine whether or not children with ID or other developmental disabilities that co-occur with ID were excluded based on inclusion/exclusion criteria. Articles were double-coded by the research team. The corresponding authors of the studies were asked to complete a survey rating the likelihood that children with ID would have been eligible for the study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of the studies, 61.3% reviewed reported exclusion criteria based on a diagnosis of intellectual disability, cognitive impairment, autism spectrum disorder, organic/neurological conditions, or other related terms (e.g., ‘significant learning difficulties’). Operationalisation of exclusion criteria was sparse. Few studies reported the number of children excluded from trials based on an ID diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The evidence base for the ISTSS clinical care guidelines of child PTSD treatment is not representative of children with ID. Improved documentation of inclusion/exclusion criteria, reporting of disability as a demographic characteristic, and inclusion of children with ID in PTSD treatment trials are needed to improve representation of children with ID in PTSD research.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1272-1283"},"PeriodicalIF":2.0,"publicationDate":"2025-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70011","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144794708","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}
Renate A. van der Heijden, Paul T. van der Heijden, Hubert P. L. M. Korzilius, Han Berghuis, Robert Didden
Background
Personality assessment in people with mild intellectual disability (MID) is difficult due to their communication difficulties and lack of reliable instruments. In addition, characteristics of maladaptive personality traits may be attributed to the intellectual disability. As a result, little is known about (maladaptive) personality traits in people with MID. The aim of this study was to explore maladaptive personality traits of people with MID and compare them to those of two comparison groups.
Methods
Maladaptive personality traits of people with MID referred to specialised mental health care (n = 75) were compared with those of people with borderline intellectual functioning referred to specialised mental health care (BIF, n = 69) and those of people with average educational levels from general mental health care (AVE, n = 73) using the Dimensional Assessment of Personality Pathology–Short Form.
Results
People with MID scored higher on Affective Lability, Anxiousness, Identity Problems, Insecure Attachment and Suspiciousness and lower on Narcissism and Social Avoidance compared to the people with AVE. No differences in personality trait scores were found between people with MID and people with BIF, except for a lower score on Social Avoidance in those with MID. Almost all differences demonstrated small effect sizes.
Discussion
Maladaptive personality traits of people with MID and comorbid psychopathology are of similar severity compared to those of people with BIF and comorbid psychopathology or people in mental health care with average educational levels. This study emphasises that clinicians look beyond the intellectual and adaptive disabilities when assessing for mental health problems in people with MID, while meeting their needs when it comes to the treatment of these problems.
{"title":"Personality Trait Profiles in People With Mild Intellectual Disability: A Comparative Study","authors":"Renate A. van der Heijden, Paul T. van der Heijden, Hubert P. L. M. Korzilius, Han Berghuis, Robert Didden","doi":"10.1111/jir.70032","DOIUrl":"10.1111/jir.70032","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Personality assessment in people with mild intellectual disability (MID) is difficult due to their communication difficulties and lack of reliable instruments. In addition, characteristics of maladaptive personality traits may be attributed to the intellectual disability. As a result, little is known about (maladaptive) personality traits in people with MID. The aim of this study was to explore maladaptive personality traits of people with MID and compare them to those of two comparison groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Maladaptive personality traits of people with MID referred to specialised mental health care (<i>n</i> = 75) were compared with those of people with borderline intellectual functioning referred to specialised mental health care (BIF, <i>n</i> = 69) and those of people with average educational levels from general mental health care (AVE, <i>n</i> = 73) using the Dimensional Assessment of Personality Pathology–Short Form.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>People with MID scored higher on Affective Lability, Anxiousness, Identity Problems, Insecure Attachment and Suspiciousness and lower on Narcissism and Social Avoidance compared to the people with AVE. No differences in personality trait scores were found between people with MID and people with BIF, except for a lower score on Social Avoidance in those with MID. Almost all differences demonstrated small effect sizes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Maladaptive personality traits of people with MID and comorbid psychopathology are of similar severity compared to those of people with BIF and comorbid psychopathology or people in mental health care with average educational levels. This study emphasises that clinicians look beyond the intellectual and adaptive disabilities when assessing for mental health problems in people with MID, while meeting their needs when it comes to the treatment of these problems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1394-1402"},"PeriodicalIF":2.0,"publicationDate":"2025-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70032","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144799360","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}
Rowena Ng, Lauren Meier, Anne O'Donnell-Luria, Jacqueline Harris
Objectives
Kabuki syndrome (KS), Wiedemann–Steiner syndrome (WSS) and O'Donnell–Luria–Rodan (ODLURO) syndrome are rare disorders caused by pathogenic variants in histone lysine methyltransferases, specifically the KMT2 gene family. All of these disorders are commonly associated with intellectual disability. Recent studies found overlap between KS and WSS cognitive phenotypes, suggesting shared disease pathogenesis. In contrast, the neuropsychological profile of ODLURO remains largely unknown. This study examines the academic learning concerns across the syndromes to better understand their cognitive profiles and provide guidance for clinical care.
Methods
Fifty caregivers participated in this study, 25 with a child with WSS (Mean age = 12.85 years, SD = 1.82), 14 with KS (Mean age = 12.06, SD = 5.91) and 11 with ODLURO (Mean age = 12.43, SD = 4.69). All caregivers completed the Colorado Learning Difficulties Questionnaire, a parent-screening inventory of learning/academic challenges, specifically in reading, math and spatial skills.
Results
Results suggest shared deficits in spatial skills, but different patterns of academic learning concerns across syndromes. Those with WSS were rated to show unique challenges in math and spatial domains, while those with ODLURO show global difficulties across areas. Individuals with KS were rated to show the most significant challenges in spatial skills, but comparable reading and math concerns.
Conclusions
Study results support recent publications on the overlapping cognitive profile in WSS and KS, specifically with distinct deficits in visual spatial processing. In contrast, ODLURO is associated with more generalised cognitive difficulties that warrant further investigation. Disruption of KMT2 genes may have common and individual effects on neurodevelopment that necessitate cross-syndrome research to illuminate gene–brain–behaviour relationships.
{"title":"Academic Learning Profiles Across Disorders of KMT2 Gene Family: Superimposed and Distinct Features Across Kabuki, Wiedemann–Steiner and ODLURO Syndromes","authors":"Rowena Ng, Lauren Meier, Anne O'Donnell-Luria, Jacqueline Harris","doi":"10.1111/jir.70017","DOIUrl":"10.1111/jir.70017","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Kabuki syndrome (KS), Wiedemann–Steiner syndrome (WSS) and O'Donnell–Luria–Rodan (ODLURO) syndrome are rare disorders caused by pathogenic variants in histone lysine methyltransferases, specifically the <i>KMT2</i> gene family. All of these disorders are commonly associated with intellectual disability. Recent studies found overlap between KS and WSS cognitive phenotypes, suggesting shared disease pathogenesis. In contrast, the neuropsychological profile of ODLURO remains largely unknown. This study examines the academic learning concerns across the syndromes to better understand their cognitive profiles and provide guidance for clinical care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Fifty caregivers participated in this study, 25 with a child with WSS (Mean age = 12.85 years, SD = 1.82), 14 with KS (Mean age = 12.06, SD = 5.91) and 11 with ODLURO (Mean age = 12.43, SD = 4.69). All caregivers completed the Colorado Learning Difficulties Questionnaire, a parent-screening inventory of learning/academic challenges, specifically in reading, math and spatial skills.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Results suggest shared deficits in spatial skills, but different patterns of academic learning concerns across syndromes. Those with WSS were rated to show unique challenges in math and spatial domains, while those with ODLURO show global difficulties across areas. Individuals with KS were rated to show the most significant challenges in spatial skills, but comparable reading and math concerns.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Study results support recent publications on the overlapping cognitive profile in WSS and KS, specifically with distinct deficits in visual spatial processing. In contrast, ODLURO is associated with more generalised cognitive difficulties that warrant further investigation. Disruption of <i>KMT2</i> genes may have common and individual effects on neurodevelopment that necessitate cross-syndrome research to illuminate gene–brain–behaviour relationships.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1295-1303"},"PeriodicalIF":2.0,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144784516","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}
To conduct a city-wide survey and investigate the risk factors of ocular disorders among institutionalised adults with intellectual disabilities (ID) in Taipei City.
Method
A cross-section city-wide ophthalmic survey was conducted in Taipei City from 2016 to 2017, involving full-day residents with ID aged over 18. Participant characteristics, including age, gender, ID severity and associated diseases, were collected for multiple logistic regression analysis to identify ocular disorder risk factors.
Result
A total of 687 participants, comprising 70.9% of the eligible individuals, were included. Refractive errors (73.8%), strabismus (32.6%), ocular hypertension (26.0%) and cataract (15.3%) were the most common ocular disorders. Myopia (73.2%) is the most common refractive error, with 14.6% being high myopia. Down's syndrome (DS) was a common risk factor for developing strabismus (OR, 2.87; 95% confidence interval [CI], 1.54 to 3.35), nystagmus (OR, 6.50; 95% CI, 2.22 to 19.0), high myopia (OR, 2.62; CI, 1.85 to 3.09), high astigmatism (OR, 3.06; CI, 1.65 to 5.69) and cataracts (OR, 8.00; CI, 3.50 to 18.30), while it served as a protective factor against ocular hypertension (OR, 0.14; CI, 0.03 to 0.62). Cerebral palsy (CP) was identified as a common risk factor for strabismus (OR, 2.17; CI, 1.16 to 4.05), nystagmus (OR, 4.22; CI, 1.51 to 11.8) and high myopia (OR, 2.22; CI, 1.04 to 4.73).
Conclusion
High prevalence of myopia, strabismus, ocular hypertension and cataract was observed in institutionalised adults with ID. DS and CP were more significant risk factors than ID severity for ocular disorders. Regular ophthalmic exams, particularly monitoring intraocular pressure, are crucial for this population.
{"title":"Prevalence and Potential Risk Factors of Ocular Disorders Among Institutionalised Adults With Intellectual Disabilities—A City-Wide Survey in Taipei City","authors":"Ching-Ju Hsieh, Tzu-Hsun Tsai, Fu-Gong Lin, Yu-Lung Chiu, I-Mo Fang","doi":"10.1111/jir.13258","DOIUrl":"10.1111/jir.13258","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>To conduct a city-wide survey and investigate the risk factors of ocular disorders among institutionalised adults with intellectual disabilities (ID) in Taipei City.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A cross-section city-wide ophthalmic survey was conducted in Taipei City from 2016 to 2017, involving full-day residents with ID aged over 18. Participant characteristics, including age, gender, ID severity and associated diseases, were collected for multiple logistic regression analysis to identify ocular disorder risk factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Result</h3>\u0000 \u0000 <p>A total of 687 participants, comprising 70.9% of the eligible individuals, were included. Refractive errors (73.8%), strabismus (32.6%), ocular hypertension (26.0%) and cataract (15.3%) were the most common ocular disorders. Myopia (73.2%) is the most common refractive error, with 14.6% being high myopia. Down's syndrome (DS) was a common risk factor for developing strabismus (OR, 2.87; 95% confidence interval [CI], 1.54 to 3.35), nystagmus (OR, 6.50; 95% CI, 2.22 to 19.0), high myopia (OR, 2.62; CI, 1.85 to 3.09), high astigmatism (OR, 3.06; CI, 1.65 to 5.69) and cataracts (OR, 8.00; CI, 3.50 to 18.30), while it served as a protective factor against ocular hypertension (OR, 0.14; CI, 0.03 to 0.62). Cerebral palsy (CP) was identified as a common risk factor for strabismus (OR, 2.17; CI, 1.16 to 4.05), nystagmus (OR, 4.22; CI, 1.51 to 11.8) and high myopia (OR, 2.22; CI, 1.04 to 4.73).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>High prevalence of myopia, strabismus, ocular hypertension and cataract was observed in institutionalised adults with ID. DS and CP were more significant risk factors than ID severity for ocular disorders. Regular ophthalmic exams, particularly monitoring intraocular pressure, are crucial for this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1205-1214"},"PeriodicalIF":2.0,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144789249","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}
Maladaptive behaviour is common in students with intellectual disability (ID). While executive functions (EFs) in typically developing children and adolescents are associated with maladaptive behaviour, there is currently contradictory and only fragmented empirical evidence on this association in students with ID. However, following impairments of EFs in this population, investigating this relationship could enhance the understanding of the development of maladaptive behaviour in students with ID.
Method
The sample consisted of 45 students with ID (M = 11.8 years). Three core EFs (executive-loaded working memory, switching, inhibition) were measured with performance-based tasks, and maladaptive behaviour was assessed using a teacher report (BASC-3).
Results
Regression analyses showed that EF significantly predicted internalising but not externalising maladaptive behaviour. Specifically, working memory was positively related to internalising maladaptive behaviour. After controlling for fluid intelligence, age and sex, inhibition was negatively related to anxious maladaptive behaviour.
Conclusions
This study yields valuable evidence on the relationship between performance-based EF and maladaptive behaviour in students with ID and offers important implications for practice. Moreover, teachers should be aware that externalising maladaptive behaviour could be indicative of underlying mental health issues in students with ID, given the strong relationship between internalising and externalising maladaptive behaviour.
{"title":"Performance-Based Executive Functions Predict Internalising but Not Externalising Maladaptive Behaviour in Students With ID","authors":"Stephan Kehl, Nina Römer","doi":"10.1111/jir.70027","DOIUrl":"10.1111/jir.70027","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Maladaptive behaviour is common in students with intellectual disability (ID). While executive functions (EFs) in typically developing children and adolescents are associated with maladaptive behaviour, there is currently contradictory and only fragmented empirical evidence on this association in students with ID. However, following impairments of EFs in this population, investigating this relationship could enhance the understanding of the development of maladaptive behaviour in students with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The sample consisted of 45 students with ID (<i>M</i> = 11.8 years). Three core EFs (executive-loaded working memory, switching, inhibition) were measured with performance-based tasks, and maladaptive behaviour was assessed using a teacher report (BASC-3).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Regression analyses showed that EF significantly predicted internalising but not externalising maladaptive behaviour. Specifically, working memory was positively related to internalising maladaptive behaviour. After controlling for fluid intelligence, age and sex, inhibition was negatively related to anxious maladaptive behaviour.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study yields valuable evidence on the relationship between performance-based EF and maladaptive behaviour in students with ID and offers important implications for practice. Moreover, teachers should be aware that externalising maladaptive behaviour could be indicative of underlying mental health issues in students with ID, given the strong relationship between internalising and externalising maladaptive behaviour.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1315-1324"},"PeriodicalIF":2.0,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144784518","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}
Yelyzaveta Snihirova, Therese van Amelsvoort, Ann Swillen, Marianne van den Bree, Dennis van der Meer, Janet Harwood, Claudia Vingerhoets, David E. J. Linden
Background
22q11.2 deletion syndrome (22q11DS) is a genetic disorder characterised by a wide range of physical, cognitive, and psychiatric symptoms. Current knowledge on 22q11DS highlights considerable variation in cognitive outcomes, but the role of environmental factors in shaping these trajectories over time remains poorly understood.
Aims
This study investigates how environmental factors contribute to variability in intelligence quotient (IQ) among individuals with 22q11DS across three European cohorts. By examining these influences over time, the research aims to identify potential drivers of IQ differences and uncover modifiable factors that may support improved cognitive outcomes in individuals with 22q11DS.
Methods
Data were collected from 297 individuals with 22q11DS across three European cohorts. Cognitive assessments included full-scale IQ (FSIQ), verbal IQ (VIQ) and performance IQ (PIQ). Environmental measures encompassed parental education, sleep, stress and substance use, gathered through questionnaires and interviews. Baseline associations between environmental measures and IQ were evaluated with ANOVA at the first assessment. To examine within-person IQ change across three visits, we used linear mixed-effects models.
Results
We found a significant decline in FSIQ, VIQ and PIQ over time, with linear trends observed for all three measures. Parental education, particularly the father's education, explained a significant proportion of the variance of all IQ-based measures.
Conclusions
Parental education emerged as a key predictor of IQ, suggesting that socioeconomic factors contribute to cognitive performance variability in individuals with 22q11DS. Even in high-penetrance genetic variants, such as the 22q11.2 deletion, environmental factors and gene–environment interactions may make significant contributions to the severity of phenotypes.
{"title":"Parental Education Predicts Longitudinal IQ Trajectories in 22q11.2 Deletion Syndrome: A Three-Cohort European Study","authors":"Yelyzaveta Snihirova, Therese van Amelsvoort, Ann Swillen, Marianne van den Bree, Dennis van der Meer, Janet Harwood, Claudia Vingerhoets, David E. J. Linden","doi":"10.1111/jir.70025","DOIUrl":"10.1111/jir.70025","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>22q11.2 deletion syndrome (22q11DS) is a genetic disorder characterised by a wide range of physical, cognitive, and psychiatric symptoms. Current knowledge on 22q11DS highlights considerable variation in cognitive outcomes, but the role of environmental factors in shaping these trajectories over time remains poorly understood.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>This study investigates how environmental factors contribute to variability in intelligence quotient (IQ) among individuals with 22q11DS across three European cohorts. By examining these influences over time, the research aims to identify potential drivers of IQ differences and uncover modifiable factors that may support improved cognitive outcomes in individuals with 22q11DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data were collected from 297 individuals with 22q11DS across three European cohorts. Cognitive assessments included full-scale IQ (FSIQ), verbal IQ (VIQ) and performance IQ (PIQ). Environmental measures encompassed parental education, sleep, stress and substance use, gathered through questionnaires and interviews. Baseline associations between environmental measures and IQ were evaluated with ANOVA at the first assessment. To examine within-person IQ change across three visits, we used linear mixed-effects models.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We found a significant decline in FSIQ, VIQ and PIQ over time, with linear trends observed for all three measures. Parental education, particularly the father's education, explained a significant proportion of the variance of all IQ-based measures.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parental education emerged as a key predictor of IQ, suggesting that socioeconomic factors contribute to cognitive performance variability in individuals with 22q11DS. Even in high-penetrance genetic variants, such as the 22q11.2 deletion, environmental factors and gene–environment interactions may make significant contributions to the severity of phenotypes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1304-1314"},"PeriodicalIF":2.0,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70025","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144784517","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}
Jessica Keeley, Zhenmei Yeap, Rachel Skoss, Thomas Nevill, Susan Hunt, Jacinta Saldaris, Jenny Downs
Background
People with intellectual disability experience higher rates of physical and mental health problems than those without intellectual disability. Health literacy includes accessing, understanding, appraising and applying health information. Improving health literacy is associated with better health outcomes. The internet is a primary source of health information for many people. This study aimed to evaluate available online health resources for people with intellectual disability and their families to understand information gaps.
Method
A scoping review of grey literature was conducted using two searches: a targeted search of disability organisation websites and an advanced Google search using key terms. The methods were guided by a modified version of Arksey and O'Malley's methodological approach.
Results
A total of 1165 health resources for people with intellectual disability and their families were identified. Tests, checks and procedures were the most common category of health addressed (n = 227, 19.5%) and most content was directed at the individual with intellectual disability (n = 837, 71.9%). Resources addressed the health literacy domains of accessing (n = 1165, 100%) and understanding (n = 1132, 97.2%) information more often than appraising (n = 575, 49.5%) and applying (n = 415, 35.6%).
Conclusions
Improving the health literacy of people with intellectual disability is an important part of addressing health disparities and requires understanding of the available information. Some information gaps were identified, including limited sexual health resources and mental health resources for adolescents.
{"title":"Online Health Literacy Resources for People With Intellectual Disability: A Grey Literature Scoping Review","authors":"Jessica Keeley, Zhenmei Yeap, Rachel Skoss, Thomas Nevill, Susan Hunt, Jacinta Saldaris, Jenny Downs","doi":"10.1111/jir.70028","DOIUrl":"10.1111/jir.70028","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability experience higher rates of physical and mental health problems than those without intellectual disability. Health literacy includes accessing, understanding, appraising and applying health information. Improving health literacy is associated with better health outcomes. The internet is a primary source of health information for many people. This study aimed to evaluate available online health resources for people with intellectual disability and their families to understand information gaps.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review of grey literature was conducted using two searches: a targeted search of disability organisation websites and an advanced Google search using key terms. The methods were guided by a modified version of Arksey and O'Malley's methodological approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 1165 health resources for people with intellectual disability and their families were identified. Tests, checks and procedures were the most common category of health addressed (<i>n</i> = 227, 19.5%) and most content was directed at the individual with intellectual disability (<i>n</i> = 837, 71.9%). Resources addressed the health literacy domains of accessing (<i>n</i> = 1165, 100%) and understanding (<i>n</i> = 1132, 97.2%) information more often than appraising (<i>n</i> = 575, 49.5%) and applying (<i>n</i> = 415, 35.6%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Improving the health literacy of people with intellectual disability is an important part of addressing health disparities and requires understanding of the available information. Some information gaps were identified, including limited sexual health resources and mental health resources for adolescents.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"121-129"},"PeriodicalIF":2.0,"publicationDate":"2025-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70028","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144768668","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}
Paula Resina, Marcela Mezzatesta, Neus Elias, Melina Aparici, Maria A. Mairena
Background
Children with complex communication needs (CCN), particularly those with autism spectrum disorder (ASD), experience significant communication challenges. This scoping review analyses the existing literature on clinical interventions designed to enhance communication in these children. The aim was to describe which intervention models are being evaluated in studies, which treatments have shown positive effects and what the clinical profile of children and adolescents who benefit from these interventions is.
Method
The scoping review was conducted following the methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).
Results
The search strategy identified 797 records; eight records met all eligibility criteria and were included for review. The review found that multimodal interventions combining augmentative and alternative communication (AAC), naturalistic strategies and parent training were the most effective in improving both expressive and receptive communication.
Conclusions
Despite the limited existing research, studies suggest that multimodal interventions can effectively enhance communication in children with CCN. This review highlights significant gaps in the literature, including the scarcity of studies with appropriate methodological rigour and the lack of standardised protocols for CCN interventions. There is a critical need for evidence-based guidelines, professional training and policy development to ensure equitable access to effective interventions.
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