Journal of Intellectual Disability Research最新文献

{"title":"Toileting Problems and Associated Factors in Adults Enrolled in the Global Angelman Syndrome Registry.","authors":"Emma Walsh, Arlene Mannion, Sally Whelan, Evan Flynn, Megan Tones, Helen Heussler, Matthew Bellgard, Geraldine Leader","doi":"10.1111/jir.70156","DOIUrl":"https://doi.org/10.1111/jir.70156","url":null,"abstract":"<p><strong>Background: </strong>Angelman Syndrome (AS) is a rare neurodevelopmental disorder caused by the lack of expression of the UBE3A gene, which can result from abnormalities of the maternally inherited chromosome 15q11-q13. The purpose of this study is to investigate the most common types of toileting problems in adults with AS and the associated factors of toileting problems in adults with AS.</p><p><strong>Method: </strong>Data from participants with AS (N = 40; aged 18-46 years) registered with the Global Angelman Registry, were divided into toileting problems and no toileting problems groups based on the presence or absence of 50% of the toileting behaviours recorded in the registry.</p><p><strong>Results: </strong>It was found that 65% of the sample presented with toileting problems. A significant association between toileting problems and type of feeding during infancy, the use of signing and the use of single words, as a form of communication, were found. Feeding type and use of signing were analysed using a logistic regression and classified 95% of individuals in the sample.</p><p><strong>Conclusion: </strong>The novel findings that this study adds are investigating toileting problems and associated factors of toileting problems in an adult sample of individuals diagnosed with AS. Little research has been conducted on toileting problems in adults with AS. The current study further adds to the small body of literature on toileting problems in adults with AS.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149224369","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}

{"title":"Speech, Language and Communication in Children With KBG Syndrome.","authors":"Harriet Smith, Megan Freeth, Silke Fricke, Danielle Matthews, Katie Lea, Alisdair McNeill","doi":"10.1111/jir.70192","DOIUrl":"https://doi.org/10.1111/jir.70192","url":null,"abstract":"<p><strong>Background: </strong>Speech, language and communication needs (SLCN) are frequently reported in KBG syndrome yet no study has investigated them using standardised assessments. This study aimed to characterise the communicative abilities of children with KBG syndrome using a combination of caregiver-reported questionnaires and adapted online speech and language assessments.</p><p><strong>Methods: </strong>Sixteen UK and US families of children with KBG syndrome (aged 3-14 years old) took part. In phase 1 of the study, caregivers (n = 16) completed online questionnaires about the child's medical and developmental history, communication ability and adaptive behaviour. In phase 2 of the study, children (n = 10) completed adapted online assessments of speech sound skills, oro-motor function, morphosyntactic ability, receptive vocabulary and sentence comprehension. Six families did not complete phase 2 due to attrition.</p><p><strong>Results: </strong>All of the 16 children included were reported to communicate using sentences. Caregiver-reported data revealed that 12/12 children assessed using the Child Communication Checklist-2 had significant communication challenges and 12/13 assessed using the Vineland Adaptive Behaviour Scales experienced differences in adaptive behaviour compared with typically developing children. Among the children assessed directly, 7/10 had speech sound skills that were not age-appropriate and 7/9 exhibited oro-motor difficulties. Six out of 10 children had lower than average receptive vocabulary, 5/10 had lower than average sentence comprehension and 5/8 had lower than average morphosyntactic processing.</p><p><strong>Conclusions: </strong>The findings indicate that SLCN are important phenotypic features of KBG syndrome, with speech and oro-motor difficulties appearing to be particularly pervasive. This underscores the need to prioritise the assessment and monitoring of SLCN in children with KBG syndrome to provide opportunity for early and targeted intervention.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149220443","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}

{"title":"Understanding Behaviours That Challenge in Children With Intellectual Disability: Parental Characteristics and Children's Support Needs.","authors":"Paulina S Arango U, D Marcela Tenorio, A Andrés Aparicio","doi":"10.1111/jir.70193","DOIUrl":"https://doi.org/10.1111/jir.70193","url":null,"abstract":"<p><strong>Background: </strong>Behaviours that challenge are prevalent among children with intellectual disability and can limit their participation and inclusion in educational and community settings. Although previous research has highlighted the role of parental factors in these behaviours, little is known about how the child's level of required support may moderate these associations. This study aimed to examine the relation between parental attitudes, styles, mental health and the behaviours that challenge in their children with intellectual disability, considering the child's level of required support as a potential moderator.</p><p><strong>Method: </strong>A cross-sectional study was conducted with 225 parents of school-aged children and adolescents with intellectual disability in Chile. Parental attitudes, styles, mental health and their child's behaviours were assessed. Structural equation modelling and multigroup analysis were used to evaluate direct and moderated effects.</p><p><strong>Results: </strong>Parents reported elevated levels of anxiety compared to national averages. Parental attitudes were the strongest predictor of behaviours that challenge. Parental mental health was significantly related to children's internalizing but not externalizing behaviours. Parenting styles were not significantly associated with either type of behaviour. Moderation analysis showed a stronger effect of positive parental attitudes for children with lower support needs than for those with moderate or high.</p><p><strong>Conclusion: </strong>Findings underscore the importance of fostering positive parental attitudes as a key intervention target for reducing behaviours that challenge in children with intellectual disability, particularly those with lower support needs. Given the high levels of anxiety among parents, providing mental health support may also be crucial. Future research should explore causal pathways using longitudinal designs and consider additional contextual factors influencing the relationship between parental variables and child behaviour.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149182252","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}

{"title":"Low Allergic Sensitisation in Wheezing Children With Down Syndrome: A Case-Control Study.","authors":"Francylene Malheiros Macedo da Cunha Rego, Geórgia Veras de Araújo Gueiros Lira, Emanuel Sávio Cavalcanti Sarinho, Patricia Gomes de Matos Bezerra, Marcilio Lins Aroucha, Igor Gabriel Araujo Medeiros, Decio Medeiros Peixoto","doi":"10.1111/jir.70191","DOIUrl":"https://doi.org/10.1111/jir.70191","url":null,"abstract":"<p><strong>Background: </strong>Respiratory disorders are frequent in children with Down syndrome (DS), causing prolonged hospitalisations and increased healthcare system costs. Among these, recurrent wheezing is common in these children despite indications of lower rates of allergic sensitisation and asthma. This discrepancy is concerning because wheezing is often misinterpreted as asthma, leading to inappropriate treatment. Therefore, this study compared the profiles of allergic sensitisation among children with wheezing with and without DS.</p><p><strong>Methods: </strong>This case-control study retrospectively reviewed medical records of children (2-12 years) with recurrent wheezing, comparing 98 with DS (cases) and 96 without DS (controls). Clinical variables (pneumonia episodes, respiratory hospitalisations), biological markers (serum total IgE, eosinophil counts) and aeroallergen sensitisation (skin prick tests and/or specific IgE) were analysed. Multivariate logistic regression was used to calculate adjusted odds ratios (OR). We analysed 194 children aged 2-12 years with recurrent wheezing, including 98 with DS (cases) and 96 without (controls).</p><p><strong>Results: </strong>Allergic sensitisation was less prevalent in children with DS (7.1%) than in the control group (59.3%). Analysis revealed that DS was a protective factor, indicating that children with DS were 95% less likely to be sensitised than those without DS. Additionally, children with DS had significantly lower eosinophil counts and total IgE levels. Among sensitised children, allergic profiles were similar between groups, with Dermatophagoides farinae as the most common allergen.</p><p><strong>Conclusion: </strong>The findings support the hypothesis of a non-allergic wheezing phenotype in children with DS, highlighting the need for individualised, precision-based management to optimise respiratory care in this population.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149182257","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}

{"title":"Unravelling Staff's Experiences: An Exploration of Staff Attitudes Towards Parental Involvement in Residential Care.","authors":"Frances R Vereijken, Noud Frielink, Andrew Jahoda, Petri J C M Embregts","doi":"10.1111/jir.70190","DOIUrl":"https://doi.org/10.1111/jir.70190","url":null,"abstract":"<p><strong>Background: </strong>In residential care for people with intellectual disabilities, support staff take over daily care responsibilities for residents with severe intellectual disabilities. However, parents often remain involved in their support. Yet little is known about the attitudes of support staff towards parental involvement in daily care.</p><p><strong>Method: </strong>A vignette-based, qualitatively driven mixed-methods study was conducted, using structured interviews with 33 participants. A qualitative content analysis was used to analyse the data, and descriptive statistics were provided about the participants' responses.</p><p><strong>Results: </strong>The findings showed diverse cognitive, affective and behavioural responses to the vignettes. Staff were mainly sympathetic towards parental involvement but also highlighted moments of friction or uncertainty.</p><p><strong>Conclusions: </strong>Examining staff's attitudes provided insight into how (past) experiences shaped collaboration with parents. More insight into the coping strategies towards the emotional responses of parents and the impact of negative experiences is needed to sufficiently support staff in collaboration with parents.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149165656","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}

{"title":"Reading Comprehension in Adults With Intellectual Disabilities: Effects of Easy-to-Read Adaptations in Spanish Short Stories.","authors":"Isam Diab-Lozano, Mari Carmen Suárez-Figueroa, Arminda Moreno-Díaz","doi":"10.1111/jir.70189","DOIUrl":"https://doi.org/10.1111/jir.70189","url":null,"abstract":"<p><strong>Background: </strong>Reading comprehension in individuals with intellectual disabilities is shaped by linguistic complexity and cognitive processing demands. Easy-to-Read (E2R) adaptations aim to reduce these demands, yet empirical evidence on their effects in narrative texts remains limited.</p><p><strong>Methods: </strong>This study examines how E2R adaptations of Spanish short stories affect reading comprehension. Thirty-seven adults with intellectual disabilities completed comprehension assessments for 11 texts in their original and adapted versions under a partially crossed, unbalanced within-subject design. Directional changes in comprehension (improvement, maintenance or worsening) were modelled using a cumulative logistic mixed-effects framework accounting for variability across both participants and texts.</p><p><strong>Results: </strong>E2R adaptations most frequently maintained comprehension and did not lead to systematic improvement or deterioration. However, both improvement and worsening occurred with nonzero probability, and variability was observed across participants and texts. Fewer syntactic difficulties were reported in the adapted versions, whereas lexical challenges persisted.</p><p><strong>Conclusions: </strong>E2R adaptations do not produce uniform gains in comprehension, and their outcomes vary across readers and narrative materials. These findings provide empirical evidence to refine the application of accessibility guidelines to narrative texts and inform the evaluation of manual and automatic text adaptation approaches.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149110866","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}

{"title":"Perceived Impact of a Dedicated Clinic for Adults With 22q11.2 Deletion Syndrome.","authors":"Joanne C Y Loo, Samantha D'Arcy, Lisa D Palmer, Radhika Sivanandan, Tracy Heung, Adonis Ng, Maria Corral, Nikolai Gil D Reyes, Anne S Bassett","doi":"10.1111/jir.70187","DOIUrl":"https://doi.org/10.1111/jir.70187","url":null,"abstract":"<p><strong>Background: </strong>22q11.2 deletion syndrome (22q11.2DS) is an under-recognized multi-system genetic condition. There are limited data available on the delivery of care for adults with 22q11.2DS or the experience of patients and caregivers.</p><p><strong>Methods: </strong>At a dedicated multidisciplinary clinic for adults with 22q11.2DS, we distributed anonymous online surveys to adults with 22q11.2DS and their caregivers. We compared the results to those from a similar survey conducted before establishing the dedicated clinic using descriptive statistics with Benjamini-Hochberg adjustment for multiple comparisons.</p><p><strong>Results: </strong>A total of 149 responses were received from 40 adult-22q-respondents and 109 caregiver-respondents, with survey completion rates of 87.5% and 89.9%, respectively. Compared to pre-clinic survey results, a significantly greater proportion of non-neutral respondents agreed that medical services were easy to access and well coordinated (89/118, 75.4% vs. 25/50, 50.0%; adjusted p = 0.012) and that appropriate transition services were provided (84/113, 74.3% vs. 15/49, 30.6%; adjusted p = 0.001). A majority reported that the clinic improved access to other services and professionals (112/120, 93.3%) and shared comprehensible information (124/124, 100.0%). Supports provided by the social worker and dietitian were valued. 75/108 (69.4%) of all non-neutral respondents noted that external providers lacked sufficient information about 22q11.2DS. As before, the top challenges noted by both patients and caregivers were neuropsychiatric conditions.</p><p><strong>Conclusions: </strong>The results support the need for, and perceived value of, specialized clinics for adults with complex healthcare needs and their caregivers.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149110818","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}

{"title":"Prevalence, Phenotypic Correlates and Predictive Factors of Catatonia in Adolescents With Autism Spectrum Disorder","authors":"Rahime Duygu Temelturk,&nbsp;Esra Yurumez,&nbsp;Banu Kaymak,&nbsp;Yağmur Özgür Karabıyıkıoglu,&nbsp;Nisa Didem Zengın,&nbsp;Didem Behice Öztop","doi":"10.1111/jir.70158","DOIUrl":"10.1111/jir.70158","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Catatonia, a psychomotor syndrome increasingly recognized in individuals with autism spectrum disorder (ASD), remains frequently underdiagnosed due to symptom overlap, particularly in adolescent populations where data remain limited. This study aimed to determine the prevalence, clinical correlates and predictive factors of catatonia in adolescents with ASD, focusing on sociodemographic, behavioural and affective characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A total of 107 adolescents aged 12–20 years with ASD were evaluated at a tertiary child and adolescent psychiatry outpatient clinic. The diagnosis of catatonia was established using DSM-5 criteria and the Bush–Francis Catatonia Rating Scale (BFCRS). ASD severity, repetitive behaviours and internalizing symptoms were assessed using the Global Assessment Scale, the Autism Behaviour Checklist (ABC), the Repetitive Behaviour Scale–Revised (RBS-R) and the Revised Child Anxiety and Depression Scale–Parent version (RCADS-P). Group comparisons, correlation analyses and binary logistic regression were performed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Catatonia was identified in 21.5% of participants. The most frequent symptoms were stereotypy (73.8%), impulsivity (37.4%), echolalia (36.4%), verbigeration (30.8%) and agitation/excitement (30.8%). Female sex, greater ASD severity, depressive symptoms and separation anxiety were significantly associated with catatonia. The catatonia group demonstrated higher scores on the ABC-Relationship Building, RBS-R-Stereotyped Behaviour and RCADS-P-Depression subscales. Logistic regression revealed that female gender and clinically significant separation anxiety symptoms were independent predictors of catatonia (Nagelkerke <i>R</i>² = 0.26, <i>p</i> &lt; 0.001).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These findings highlight the importance of targeted screening for catatonia in ASD populations, particularly in females and individuals with co-occurring separation anxiety symptoms. Early recognition and intervention may mitigate functional deterioration and improve clinical outcomes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 11","pages":"1215-1228"},"PeriodicalIF":2.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70158","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148794160","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}

{"title":"Ageing in Adults With Mild and Moderate Intellectual Disabilities in Brazil: A Biopsychosocial Comparison of Individuals With and Without Down Syndrome","authors":"Leila Regina de Castro,&nbsp;Rita de Cassia Ernandes,&nbsp;Erika Christina Gouveia e Silva,&nbsp;Luciana Mascarenhas Fonseca,&nbsp;José Maria Montiel,&nbsp;Angelica Castilho Alonso","doi":"10.1111/jir.70151","DOIUrl":"10.1111/jir.70151","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>The objective of this study is to investigate functional, cognitive, physical and nutritional outcomes in adults with intellectual disabilities (IDs), comparing individuals with and without Down syndrome from São Paulo, Brazil, and to evaluate the associations of group, degree of disability, age and sex with these outcomes. Additionally, we hypothesized that individuals with Down syndrome would present greater vulnerability to cognitive and physical decline compared to those with ID of other aetiologies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This cross-sectional observational study included 52 adults with ID divided into two groups: (1) 24 participants with Down syndrome (ID-DS) and (2) 28 participants with non-DS aetiologies (ID-nonDS). Assessments included sociodemographic and clinical data; functional independence measure (FIM); physical performance (handgrip strength, 30-s sit-to-stand test, gait speed test and MiniBESTest); nutritional status (Mini Nutritional Assessment [MNA]); cognitive function (Cambridge Cognitive Examination for Mental Disorders of the Elderly–Down Syndrome [CAMCOG-DS]); cognitive decline (Informant Questionnaire on Cognitive Decline in the Elderly [IQCODE]); and functional activities (Pfeffer Questionnaire [QPAF]). Data were obtained through self-report whenever possible, and proxy report (caregivers) when necessary, based on participants' communication abilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Compared with the ID-nonDS group, the ID-DS group demonstrated significantly poorer learning (<i>β</i> = −2.56; <i>p</i> = 0.049) and remote memory performance (<i>β</i> = −1.18; <i>p</i> = 0.011), a nonsignificant trend towards lower handgrip strength (<i>β</i> = −4.68; <i>p</i> = 0.051) and more falls (<i>β</i> = −0.39; <i>p</i> = 0.050). Sex and degree of disability were associated with several outcomes, whereas age showed no significant effect.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Adults in the ID-DS group exhibited cognitive and physical profiles suggestive of increased vulnerability to age-related functional impairment compared with adults with other forms of ID. These findings should be interpreted cautiously due to the cross-sectional design and sample size limitations. Replication in larger samples will be necessary to confirm these observations.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 11","pages":"1192-1202"},"PeriodicalIF":2.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70151","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148604200","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}

{"title":"Effectiveness and Cost-Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review","authors":"Jenny Downs,&nbsp;Dragana Prodanovic,&nbsp;Ruth Leong,&nbsp;Katie Brooker,&nbsp;Helen Leonard,&nbsp;Julian N. Trollor,&nbsp;Kitty-Rose Foley","doi":"10.1111/jir.70148","DOIUrl":"10.1111/jir.70148","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;People with intellectual disability experience significant gaps in healthcare delivery resulting in poor health outcomes. Appropriately designed healthcare is required to meet the needs of this population and achieve better health outcomes. Little is known about the structure of healthcare delivery for people with intellectual disability and whether it is effective or cost-effective. To improve health services, this scoping review sought to describe how models of healthcare are structured and summarise evidence for their effectiveness and cost-effectiveness for people with intellectual disability in Australia.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A preliminary search of literature describing models of healthcare for people with intellectual disability in Australia was conducted to generate a description of how healthcare is delivered for people with intellectual disability. Following PRISMA-ScR guidelines, an electronic search of peer-reviewed literature of four databases (MEDLINE, CINAHL, PsycINFO and Cochrane Library) was undertaken in August 2024 and updated in February 2025, and websites of government departments of health across Australia were searched for grey literature. All study designs conducted in any healthcare setting in Australia were included if evaluation data were available. Outcome data related to the person with intellectual disability, carers, clinicians/service providers or health services were extracted. Data were synthesised qualitatively.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Fifteen publications were identified including 10 peer-reviewed articles and five reports in the grey literature. The following components of healthcare delivery were described: reasonable adjustments, person-centred care, capacity building, care coordination, cross-sectoral coordination and specialist multidisciplinary teams. Each model of care was associated with some evidence of effectiveness. Cost-effectiveness was found with models that used cross-sectoral care coordination.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The models of care were heterogeneous, and evaluations indicated positive outcomes including better health outcomes and reduced costs. The scope of evaluations and therefore generalisability of findings was limited. More high-quality research and suitable measures of outcome are needed to guide the design of best practice healthcare for people with intellectual disability. These findings provide important guidance for the implementation of the National Roadmap for Improvin","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 11","pages":"1160-1178"},"PeriodicalIF":2.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70148","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148471181","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}