Background: Assessing communication in individuals with intellectual disabilities is essential yet challenging because of the complexity of the construct and limited availability of psychometrically robust tools. This review aimed to evaluate the validity and reliability of communication questionnaires used with this population.
Method: A systematic review was conducted following PRISMA 2020 guidelines and COSMIN definitions for validity and reliability. Five databases (Cinahl, Embase, Eric, PsycINFO and PubMed) were searched for studies published from 2000 to 2024. Inclusion criteria required questionnaires to assess communication in individuals with intellectual disabilities and report on validity or reliability. Methodological quality was appraised using the QualSyst tool.
Results: Six questionnaires described in five studies and three manuals met the inclusion criteria. Validity evidence was more frequently reported than reliability, though both were inconsistently documented. No questionnaire demonstrated a comprehensive evaluation of validity or reliability. Content validity was often limited by a lack of stakeholder involvement.
Conclusions: Current questionnaires show promise but require further validation. Future research should prioritise stakeholder engagement, content and structural validity to ensure an inclusive, reliable communication assessment. Prospero Id: CRD42023413902.
{"title":"Reliability and Validity of Questionnaires to Assess Communication Skills in People With Intellectual Disabilities: A Systematic Review.","authors":"Catriona Windsor, Kari-Anne Bottegård Næss, Melanie Kirmess, Stijn Deckers, Natalie Ballentine, Sangwon Yoon, Renée Speyer","doi":"10.1111/jir.70063","DOIUrl":"https://doi.org/10.1111/jir.70063","url":null,"abstract":"<p><strong>Background: </strong>Assessing communication in individuals with intellectual disabilities is essential yet challenging because of the complexity of the construct and limited availability of psychometrically robust tools. This review aimed to evaluate the validity and reliability of communication questionnaires used with this population.</p><p><strong>Method: </strong>A systematic review was conducted following PRISMA 2020 guidelines and COSMIN definitions for validity and reliability. Five databases (Cinahl, Embase, Eric, PsycINFO and PubMed) were searched for studies published from 2000 to 2024. Inclusion criteria required questionnaires to assess communication in individuals with intellectual disabilities and report on validity or reliability. Methodological quality was appraised using the QualSyst tool.</p><p><strong>Results: </strong>Six questionnaires described in five studies and three manuals met the inclusion criteria. Validity evidence was more frequently reported than reliability, though both were inconsistently documented. No questionnaire demonstrated a comprehensive evaluation of validity or reliability. Content validity was often limited by a lack of stakeholder involvement.</p><p><strong>Conclusions: </strong>Current questionnaires show promise but require further validation. Future research should prioritise stakeholder engagement, content and structural validity to ensure an inclusive, reliable communication assessment. Prospero Id: CRD42023413902.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145654236","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}
Manami Koizumi, Waka Kobayashi, Shuhei Ogawa, Michio Kojima
Background
Children with intellectual disability (ID) have significantly delayed morphological and syntactic development. This study aimed to establish the link between vocabulary and syntactic development in children with autism spectrum disorder (ASD) and Down syndrome (DS) compared with children with typical development (TD), controlling for mental age (MA) as defined by the Tanaka–Binet Intelligence Scale V.
Methods
Participants comprised children with ID (N = 33), including 14 with ASD and 19 with DS; chronological age (CA) ranged from 9 to 17 years, with an MA of over 4 years. Children with TD (N = 28) had a CA of 5 years. Participants were assessed on vocabulary comprehension, vocabulary expression, syntactic comprehension and syntactic expression. We examined both group differences and within-group associations between vocabulary and syntax.
Results
Although we witnessed no significant differences in vocabulary comprehension or expression, children with ASD and DS performed significantly lower on syntactic comprehension and expression tasks than MA-matched children with TD. Both groups demonstrated difficulty with grammatical items requiring understanding of grammatical morphemes and grammatical knowledge.
Conclusion
Both groups exhibited vocabulary development similar to that of children with TD; however, their syntactic development was lower than expected considering their MA and vocabulary development. Building and examining approaches focusing on syntax, particularly grammatical morphology, is important in educational and clinical practice for Japanese children with ASD and DS.
{"title":"Vocabulary and Syntactic Development in Japanese Children With Autism Spectrum Disorder and Down Syndrome Accompanied by Intellectual Disability","authors":"Manami Koizumi, Waka Kobayashi, Shuhei Ogawa, Michio Kojima","doi":"10.1111/jir.70062","DOIUrl":"10.1111/jir.70062","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual disability (ID) have significantly delayed morphological and syntactic development. This study aimed to establish the link between vocabulary and syntactic development in children with autism spectrum disorder (ASD) and Down syndrome (DS) compared with children with typical development (TD), controlling for mental age (MA) as defined by the Tanaka–Binet Intelligence Scale V.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants comprised children with ID (<i>N</i> = 33), including 14 with ASD and 19 with DS; chronological age (CA) ranged from 9 to 17 years, with an MA of over 4 years. Children with TD (<i>N</i> = 28) had a CA of 5 years. Participants were assessed on vocabulary comprehension, vocabulary expression, syntactic comprehension and syntactic expression. We examined both group differences and within-group associations between vocabulary and syntax.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Although we witnessed no significant differences in vocabulary comprehension or expression, children with ASD and DS performed significantly lower on syntactic comprehension and expression tasks than MA-matched children with TD. Both groups demonstrated difficulty with grammatical items requiring understanding of grammatical morphemes and grammatical knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Both groups exhibited vocabulary development similar to that of children with TD; however, their syntactic development was lower than expected considering their MA and vocabulary development. Building and examining approaches focusing on syntax, particularly grammatical morphology, is important in educational and clinical practice for Japanese children with ASD and DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"171-179"},"PeriodicalIF":2.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145654271","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}
Intellectual disability (ID) and schizophrenia are known to separately carry a high risk of comorbidity of mental health and physical conditions. However, the prevalence and risk of comorbidities among people diagnosed with concurrent ID and schizophrenia have to date not been studied.
Methods
From a cohort including all people in Skåne, Sweden, the following three groups were established: (1) people with ID and concurrent schizophrenia, (2) people with ID without schizophrenia and (3) people with schizophrenia without ID. Diagnoses were determined using the Region Skåne healthcare database. Poisson regression was used to estimate relative risks (RRs) with 95% confidence intervals (CIs) of having at least one diagnosis in each ICD-10 chapter or block for group 1 versus groups 2 and 3, respectively. All analyses were adjusted for age at inclusion (i.e., 2014, continuous variable), sex and ethnicity.
Results
For several diagnostic chapters, there were higher risks among people with ID and schizophrenia, compared to both those with ID without schizophrenia and those with schizophrenia but without ID. These chapters included the following: I (parasites), III (blood and immunity), IV (endocrine), VII (eye), XII (skin and tissue) and XIV (genitourinary). The blocks with the highest risks compared to the other two groups were diabetes mellitus, disorders of other endocrine glands, obesity and other hyperalimentation, organic—including symptomatic and mental health conditions, extrapyramidal and movement and other respiratory diseases principally affecting the interstitium.
Conclusions
People with the combination of ID and schizophrenia had an increased risk of both physical and mental health conditions that could not be explained by either ID or schizophrenia alone. A correct diagnosis for people with the combination of ID and schizophrenia is important for the provision of adequate treatment. Future research should investigate pathways and explanatory factors, as well as the provision of services for people with ID and schizophrenia.
{"title":"Comorbidities in People With Intellectual Disability With and Without Schizophrenia and Schizophrenia Without Intellectual Disability: A Swedish Register Study (IDcare)","authors":"Trine Lise Bakken, Anna Axmon, Magnus Sandberg","doi":"10.1111/jir.70067","DOIUrl":"10.1111/jir.70067","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Intellectual disability (ID) and schizophrenia are known to separately carry a high risk of comorbidity of mental health and physical conditions. However, the prevalence and risk of comorbidities among people diagnosed with concurrent ID and schizophrenia have to date not been studied.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>From a cohort including all people in Skåne, Sweden, the following three groups were established: (1) people with ID and concurrent schizophrenia, (2) people with ID without schizophrenia and (3) people with schizophrenia without ID. Diagnoses were determined using the Region Skåne healthcare database. Poisson regression was used to estimate relative risks (RRs) with 95% confidence intervals (CIs) of having at least one diagnosis in each ICD-10 chapter or block for group 1 versus groups 2 and 3, respectively. All analyses were adjusted for age at inclusion (i.e., 2014, continuous variable), sex and ethnicity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>For several diagnostic chapters, there were higher risks among people with ID and schizophrenia, compared to both those with ID without schizophrenia and those with schizophrenia but without ID. These chapters included the following: I (parasites), III (blood and immunity), IV (endocrine), VII (eye), XII (skin and tissue) and XIV (genitourinary). The blocks with the highest risks compared to the other two groups were diabetes mellitus, disorders of other endocrine glands, obesity and other hyperalimentation, organic—including symptomatic and mental health conditions, extrapyramidal and movement and other respiratory diseases principally affecting the interstitium.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People with the combination of ID and schizophrenia had an increased risk of both physical and mental health conditions that could not be explained by either ID or schizophrenia alone. A correct diagnosis for people with the combination of ID and schizophrenia is important for the provision of adequate treatment. Future research should investigate pathways and explanatory factors, as well as the provision of services for people with ID and schizophrenia.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"206-217"},"PeriodicalIF":2.0,"publicationDate":"2025-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145648568","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}
Background: Rare genetic variation can predispose individuals to the development of schizophrenia, with certain genes and copy number variants (CNVs) conferring risk at the exome/genome-wide level. Despite this strong association, little is known about antipsychotic effectiveness and tolerability among individuals with most of these disorders. As such, this retrospective chart review sought to gather more data regarding the real-world use of antipsychotics in this context.
Methods: This largely descriptive, cross-sectional and retrospective chart review took place at a developmental disabilities mental health clinic. Clinical information was primarily derived from electronic medical records. Individuals with a history of psychosis and antipsychotic exposure identified as having a genetic variant known to confer exome/genome-wide risk for schizophrenia were included in the study.
Results: Of the 1196 charts reviewed, 24 individuals with a relevant genetic variant were identified, 11 of whom had experienced psychotic symptoms that were treated with antipsychotic medication. Six have 22q11.2 deletion syndrome, two have 15q11-q13 duplication syndrome and one individual each has a 16p11.2 duplication, a 7q11.23 duplication and a missense variant in TRIO. Overall, antipsychotic therapy tended to be reasonably effective and well tolerated (particularly among those individuals who do not have 22q11.2 deletion syndrome), despite side effects of some kind occurring in most cases.
Conclusion: While this study had numerous limitations that prevent firm conclusions from being drawn, it provides preliminary evidence that antipsychotics may be relatively safe and effective in at least some of the genetic disorders most strongly associated with schizophrenia.
{"title":"Antipsychotic Use Among Intellectually Disabled Individuals With Rare Genetic Variants That Confer Risk for Schizophrenia.","authors":"Mark Ainsley Colijn","doi":"10.1111/jir.70065","DOIUrl":"https://doi.org/10.1111/jir.70065","url":null,"abstract":"<p><strong>Background: </strong>Rare genetic variation can predispose individuals to the development of schizophrenia, with certain genes and copy number variants (CNVs) conferring risk at the exome/genome-wide level. Despite this strong association, little is known about antipsychotic effectiveness and tolerability among individuals with most of these disorders. As such, this retrospective chart review sought to gather more data regarding the real-world use of antipsychotics in this context.</p><p><strong>Methods: </strong>This largely descriptive, cross-sectional and retrospective chart review took place at a developmental disabilities mental health clinic. Clinical information was primarily derived from electronic medical records. Individuals with a history of psychosis and antipsychotic exposure identified as having a genetic variant known to confer exome/genome-wide risk for schizophrenia were included in the study.</p><p><strong>Results: </strong>Of the 1196 charts reviewed, 24 individuals with a relevant genetic variant were identified, 11 of whom had experienced psychotic symptoms that were treated with antipsychotic medication. Six have 22q11.2 deletion syndrome, two have 15q11-q13 duplication syndrome and one individual each has a 16p11.2 duplication, a 7q11.23 duplication and a missense variant in TRIO. Overall, antipsychotic therapy tended to be reasonably effective and well tolerated (particularly among those individuals who do not have 22q11.2 deletion syndrome), despite side effects of some kind occurring in most cases.</p><p><strong>Conclusion: </strong>While this study had numerous limitations that prevent firm conclusions from being drawn, it provides preliminary evidence that antipsychotics may be relatively safe and effective in at least some of the genetic disorders most strongly associated with schizophrenia.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145648042","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}
Z. Sienna Pan, Carlo Schuengel, Barry Coughlan, Lianne Bakkum, Matt Woolgar, Sarah Carman, Robbie Duschinsky
Background
There is growing recognition that many young people (<18 years) with intellectual disability (ID) may benefit from psychosocial support provided by mental health services, yet intervention outcomes have not been robustly evaluated.
Method
Data from 1986 episodes of care for young people with ID and 3968 matched episodes for those without ID were extracted from electronic health records of the South London and Maudsley NHS Foundation Trust (2001–2023). Psychosocial functioning was assessed using the Children's Global Assessment Scale (CGAS).
Results
ID frequently co-occurred with other neurodevelopmental conditions and behavioural difficulties (prevalence > 50%). CGAS scores at service entry positively predicted CGAS scores at discharge; however, this association weakened in the presence of ID and co-occurring pervasive developmental disorders or hyperkinetic disorders. ID was associated with lower CGAS scores at discharge than those without ID. Within the ID group, young people with severe/profound ID and comorbidities demonstrated greater rates of improvement than those with severe/profound ID only. 20% of young people with ID showed clinically significant improvement at discharge (reliable change index ≥ 1.96). Despite this improvement, 80% of the same group continued to experience substantial impairment (CGAS < 61).
Conclusions
Most young people with ID remained substantially impaired at discharge, highlighting the complexity of their needs and the importance of sustained, targeted support. Further research should examine specific intervention types and treatment trajectories in this population.
{"title":"Young People With and Without Intellectual Disability Accessing Mental Health Services: Evaluating Psychosocial Functioning Outcomes Using Electronic Health Records","authors":"Z. Sienna Pan, Carlo Schuengel, Barry Coughlan, Lianne Bakkum, Matt Woolgar, Sarah Carman, Robbie Duschinsky","doi":"10.1111/jir.70066","DOIUrl":"10.1111/jir.70066","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is growing recognition that many young people (<18 years) with intellectual disability (ID) may benefit from psychosocial support provided by mental health services, yet intervention outcomes have not been robustly evaluated.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Data from 1986 episodes of care for young people with ID and 3968 matched episodes for those without ID were extracted from electronic health records of the South London and Maudsley NHS Foundation Trust (2001–2023). Psychosocial functioning was assessed using the Children's Global Assessment Scale (CGAS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>ID frequently co-occurred with other neurodevelopmental conditions and behavioural difficulties (prevalence > 50%). CGAS scores at service entry positively predicted CGAS scores at discharge; however, this association weakened in the presence of ID and co-occurring pervasive developmental disorders or hyperkinetic disorders. ID was associated with lower CGAS scores at discharge than those without ID. Within the ID group, young people with severe/profound ID and comorbidities demonstrated greater rates of improvement than those with severe/profound ID only. 20% of young people with ID showed clinically significant improvement at discharge (reliable change index ≥ 1.96). Despite this improvement, 80% of the same group continued to experience substantial impairment (CGAS < 61).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Most young people with ID remained substantially impaired at discharge, highlighting the complexity of their needs and the importance of sustained, targeted support. Further research should examine specific intervention types and treatment trajectories in this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"194-205"},"PeriodicalIF":2.0,"publicationDate":"2025-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145634584","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}
Rebecca R. Kammes, Elizabeth Liffley, Marisa H. Fisher
Background
Adults with intellectual disabilities (ID) face unique barriers in forming romantic/intimate relationships, including being labelled as ‘vulnerable adults’. Parents are often more involved in the lives of their adult children with ID including with intimate relationships. This involvement can both support and restrict the development of autonomy and intimacy. Understanding how parents perceive and respond to their child's vulnerability is essential, as these perceptions can directly influence the opportunities and support their children receive in navigating romantic and intimate relationships. The aim of this study was to explore how parents' perceptions of vulnerability impact their involvement in the intimate relationship experiences of their adult children with ID compared to their adult child without ID.
Methods
As part of a larger convergent mixed methods research study, 20 parents who had an adult child with ID and an adult child without ID participated in semistructured interviews. Secondary data analysis of qualitative data from these interviews was conducted to examine themes related to the impact of vulnerability on experiences.
Results
Parents described perceiving their adult children with ID as more vulnerable, leading to delayed discussions about sexuality, heightened concerns and more direct involvement in their relationship experiences compared to their adult children without ID. They also described struggling to balance protective behaviours with fostering independence.
Conclusion
Findings highlight the nuanced challenges parents face due to societal norms, communication barriers and their adult child's cognitive and adaptive functioning—all of which contribute to heightened perceptions of vulnerability. These perceptions, in turn, shape the level and nature of parental involvement in their adult child's romantic and intimate relationships. This study emphasises the need for parental support, resources and programming to facilitate safe and fulfilling romantic and intimate relationship experiences for adults with ID.
{"title":"Perceived Vulnerability and Parents' Views on Intimate Relationships: Adults With Intellectual Disabilities Versus Their Siblings","authors":"Rebecca R. Kammes, Elizabeth Liffley, Marisa H. Fisher","doi":"10.1111/jir.70061","DOIUrl":"10.1111/jir.70061","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disabilities (ID) face unique barriers in forming romantic/intimate relationships, including being labelled as ‘vulnerable adults’. Parents are often more involved in the lives of their adult children with ID including with intimate relationships. This involvement can both support and restrict the development of autonomy and intimacy. Understanding how parents perceive and respond to their child's vulnerability is essential, as these perceptions can directly influence the opportunities and support their children receive in navigating romantic and intimate relationships. The aim of this study was to explore how parents' perceptions of vulnerability impact their involvement in the intimate relationship experiences of their adult children with ID compared to their adult child without ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>As part of a larger convergent mixed methods research study, 20 parents who had an adult child with ID and an adult child without ID participated in semistructured interviews. Secondary data analysis of qualitative data from these interviews was conducted to examine themes related to the impact of vulnerability on experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Parents described perceiving their adult children with ID as more vulnerable, leading to delayed discussions about sexuality, heightened concerns and more direct involvement in their relationship experiences compared to their adult children without ID. They also described struggling to balance protective behaviours with fostering independence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Findings highlight the nuanced challenges parents face due to societal norms, communication barriers and their adult child's cognitive and adaptive functioning—all of which contribute to heightened perceptions of vulnerability. These perceptions, in turn, shape the level and nature of parental involvement in their adult child's romantic and intimate relationships. This study emphasises the need for parental support, resources and programming to facilitate safe and fulfilling romantic and intimate relationship experiences for adults with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"105-115"},"PeriodicalIF":2.0,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145604542","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}
Early screening tools for autism spectrum disorders (ASDs) have made great strides in recent years. The BeDevel is a comprehensive and precise screening instrument that addresses many of the shortcomings found in other screening instruments, including limited cultural adaptability and insufficient sensitivity. Therefore, we further analyzed its cultural adaptability and validity.
Methods
We worked with the original development team to translate and back-translate the BeDevel into Chinese. With the guidance of a committee, we made semantic and cultural modifications to the BeDevel to assess its cross-cultural adaptability. We gathered validation data from 542 participants (9–11 months, n = 24; 12–17 months, n = 61; 18–23 months, n = 136; 24–35 months, n = 217; 36–42 months, n = 104). The study included 191 individuals with ASD, 103 with DD and 248 with TD. Individual items and total scores were analyzed for internal consistency, agreement with clinical diagnosis (yielding optimal cut off numbers of Item, sensitivity, specificity, positive predictive value [PPV] and negative predictive value [NPV]) and consistency with existing diagnostic instruments.
Results
The mean Cronbach's α coefficients of the Chinese version of BeDevel-I/P were all above 0.8 (ranging from 0.872 to 0.93), with correlation coefficients greater than 0.05 (r = 0.061 to 0.834). Metrics of diagnostic accuracy across age groups were as follows: κ coefficient, 0.064–0.722; sensitivity, 0.853–0.962; specificity, 0.429–1.000; PPV, 0.758–1.000; and NPV, 0.700–0.974. κ values for interinstrument consistency ranged from 0.432 to 0.973 and exceeded 60% for all instruments compared.
Conclusions
The Chinese version of the BeDevel has demonstrated high reliability and effectiveness in screening for autism. Therefore, we recommend this validated C-BeDevel for Level 2 ASD screening in both clinical and maternal and child health settings.
{"title":"Level 2 Screening for Autism Spectrum Disorder in Young Children: Cross-Cultural Adaptation and Validation of the Behaviour Development Screening for Toddlers (BeDevel) in China","authors":"Kaiyan Gan, Bei Sun, Guiyoung Bong, Qian Li, Yuan Chen, Nana Qiu, Anqi Huang, Ziyi Zhang, Zenghe Yue, Hee Jeong Yoo, Xiaoyan Ke","doi":"10.1111/jir.70064","DOIUrl":"10.1111/jir.70064","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Early screening tools for autism spectrum disorders (ASDs) have made great strides in recent years. The BeDevel is a comprehensive and precise screening instrument that addresses many of the shortcomings found in other screening instruments, including limited cultural adaptability and insufficient sensitivity. Therefore, we further analyzed its cultural adaptability and validity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We worked with the original development team to translate and back-translate the BeDevel into Chinese. With the guidance of a committee, we made semantic and cultural modifications to the BeDevel to assess its cross-cultural adaptability. We gathered validation data from 542 participants (9–11 months, <i>n</i> = 24; 12–17 months, <i>n</i> = 61; 18–23 months, <i>n</i> = 136; 24–35 months, <i>n</i> = 217; 36–42 months, <i>n</i> = 104). The study included 191 individuals with ASD, 103 with DD and 248 with TD. Individual items and total scores were analyzed for internal consistency, agreement with clinical diagnosis (yielding optimal cut off numbers of Item, sensitivity, specificity, positive predictive value [PPV] and negative predictive value [NPV]) and consistency with existing diagnostic instruments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The mean Cronbach's α coefficients of the Chinese version of BeDevel-I/P were all above 0.8 (ranging from 0.872 to 0.93), with correlation coefficients greater than 0.05 (<i>r</i> = 0.061 to 0.834). Metrics of diagnostic accuracy across age groups were as follows: κ coefficient, 0.064–0.722; sensitivity, 0.853–0.962; specificity, 0.429–1.000; PPV, 0.758–1.000; and NPV, 0.700–0.974. κ values for interinstrument consistency ranged from 0.432 to 0.973 and exceeded 60% for all instruments compared.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The Chinese version of the BeDevel has demonstrated high reliability and effectiveness in screening for autism. Therefore, we recommend this validated C-BeDevel for Level 2 ASD screening in both clinical and maternal and child health settings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"180-193"},"PeriodicalIF":2.0,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145604471","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}
Kirsten I. de Oude, Rosalie J. E. Bonnet, Roy G. Elbers, Dederieke A. M. Maes-Festen, Alyt Oppewal
Background
The amount of muscle mass is an important criterion to diagnose sarcopenia. Two feasible methods for measuring muscle mass in adults with intellectual disabilities (ID) are bioelectrical impedance analysis (BIA) and calf circumference (CC). CC measurements are more accessible, cheaper and easier to use than BIA in adults with ID. This study aimed to investigate the construct validity and intrarater reliability of CC to estimate muscle mass compared to BIA in adults with mild and moderate ID and cardiovascular risk factors (CVRF).
Methods
This study was part of the PRET study (NTR, NL8382), which examined the effect of Progressive Resistance Exercise Training on cardiovascular risk factors in 36 adults with ID (55.58 years, SD: 12.89). Construct validity was analysed with Pearson's correlations between CC and BIA measurements (skeletal muscle mass [SMM], segmental muscle mass [SegMM] and skeletal muscle index [SMI]). The intrarater reliability was analysed with the intraclass correlation coefficient (ICC).
Results
The correlation between CC and SMM was 0.19 (95% CI [−0.16, 0.49]), 0.60 (95% CI [0.33, 0.78]) between CC and SegMM and 0.69 (95% CI [0.47, 0.83]) between CC and SMI. The ICC was 0.94 (95% CI [0.89, 0.97]).
Conclusions
The excellent intrarater reliability of CC indicates that CC measurements are reliable within the same assessor for adults with ID and CVRF. However, the use of CC to estimate muscle mass compared to BIA remains questionable.
背景：肌肉量是诊断肌少症的重要标准。两种可行的测量成人智力障碍（ID）肌肉质量的方法是生物电阻抗分析（BIA）和小腿围（CC）。在成年ID患者中，CC测量比BIA更容易获得、更便宜、更容易使用。本研究旨在探讨CC与BIA在轻度和中度ID和心血管危险因素（CVRF）成人中估算肌肉质量的结构效度和内部信度。方法：本研究是PRET研究（NTR, NL8382）的一部分，该研究考察了渐进式阻力运动训练对36例ID成人（55.58岁，SD: 12.89）心血管危险因素的影响。采用CC和BIA测量（骨骼肌质量[SMM]、节段肌质量[SegMM]和骨骼肌指数[SMI]）之间的Pearson相关性分析结构效度。用类内相关系数（ICC）分析类内信度。结果：CC与SMM的相关性为0.19 (95% CI [-0.16, 0.49])， CC与SegMM的相关性为0.60 (95% CI [0.33, 0.78])， CC与SMI的相关性为0.69 （95% CI[0.47, 0.83]）。ICC为0.94 （95% CI[0.89, 0.97]）。结论：CC出色的内部信度表明，对于患有ID和CVRF的成人，CC测量在同一评估器内是可靠的。然而，与BIA相比，使用CC来估计肌肉质量仍然值得商榷。
{"title":"Measuring Muscle Mass in Adults With Intellectual Disabilities: The Reliability and Construct Validity of Calf Circumference","authors":"Kirsten I. de Oude, Rosalie J. E. Bonnet, Roy G. Elbers, Dederieke A. M. Maes-Festen, Alyt Oppewal","doi":"10.1111/jir.70060","DOIUrl":"10.1111/jir.70060","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The amount of muscle mass is an important criterion to diagnose sarcopenia. Two feasible methods for measuring muscle mass in adults with intellectual disabilities (ID) are bioelectrical impedance analysis (BIA) and calf circumference (CC). CC measurements are more accessible, cheaper and easier to use than BIA in adults with ID. This study aimed to investigate the construct validity and intrarater reliability of CC to estimate muscle mass compared to BIA in adults with mild and moderate ID and cardiovascular risk factors (CVRF).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study was part of the PRET study (NTR, NL8382), which examined the effect of Progressive Resistance Exercise Training on cardiovascular risk factors in 36 adults with ID (55.58 years, SD: 12.89). Construct validity was analysed with Pearson's correlations between CC and BIA measurements (skeletal muscle mass [SMM], segmental muscle mass [SegMM] and skeletal muscle index [SMI]). The intrarater reliability was analysed with the intraclass correlation coefficient (ICC).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The correlation between CC and SMM was 0.19 (95% CI [−0.16, 0.49]), 0.60 (95% CI [0.33, 0.78]) between CC and SegMM and 0.69 (95% CI [0.47, 0.83]) between CC and SMI. The ICC was 0.94 (95% CI [0.89, 0.97]).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The excellent intrarater reliability of CC indicates that CC measurements are reliable within the same assessor for adults with ID and CVRF. However, the use of CC to estimate muscle mass compared to BIA remains questionable.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"97-104"},"PeriodicalIF":2.0,"publicationDate":"2025-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70060","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145523641","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}
Jane Ye In Hwang, Julian Trofimovs, Hulya Sinmaz, Preeyaporn Srasuebkul, Phillip Snoyman, Stephen Hampton, Tony Butler, Samuel R. C. Arnold, Rebecca Reeve, Julian N. Trollor
Background
Individuals with intellectual disability are often reported to be overrepresented in prison populations and to have higher recidivism rates compared to those without intellectual disability, although these patterns vary substantially between countries and jurisdictions. Receiving post-release disability support services have been associated with reduced recidivism, most likely through mechanisms such as improved housing stability, mental health and social integration. This study aimed to further this literature by exploring predictors of receiving disability support after release from prison in adults with intellectual disability.
Methods
This retrospective cohort study analysed linked health and administrative data from New South Wales, Australia, to identify predictors of post-release disability support. Discrete-time survival analysis was used, incorporating variables such as age, gender, Aboriginal status and comorbid conditions. Insights from lived experience consultants with intellectual disability and incarceration histories were integrated to enhance our understanding of the findings and implications.
Results
A total of 1868 individuals with intellectual disability were released from custody in New South Wales between 2005 and 2015 and included in this study. Of these, 49.1% received disability support services in the year following release. Older age, mental illness and substance use were associated with a lower likelihood of receiving support, whilst autism, history of self-harm and higher socio-economic status were linked to increased support. These findings are evident of ‘cycling’ (repeated incarceration), ‘complexity’ (overlapping needs), ‘acuteness’ (health service contact) and ‘resources’ (social and financial) effects in shaping access to post-release support.
Conclusions
The findings reflect the challenge presented by the complex needs of those with intellectual disability who are justice-involved. The harmful and perpetuating nature of repeated incarceration for those with intellectual disability must be recognized and responded to. Targeted release planning is needed to improve disability support service receipt, particularly for those who have served long or repeated sentences and those with complex co-occurring mental health needs, with financial and social resource enhancement being ideal additional targets for intervention.
{"title":"Predictors of Receiving Disability Support Services After Release From Prison in Adults With Intellectual Disability: A Population-Based Linkage Study From New South Wales, Australia","authors":"Jane Ye In Hwang, Julian Trofimovs, Hulya Sinmaz, Preeyaporn Srasuebkul, Phillip Snoyman, Stephen Hampton, Tony Butler, Samuel R. C. Arnold, Rebecca Reeve, Julian N. Trollor","doi":"10.1111/jir.70058","DOIUrl":"10.1111/jir.70058","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disability are often reported to be overrepresented in prison populations and to have higher recidivism rates compared to those without intellectual disability, although these patterns vary substantially between countries and jurisdictions. Receiving post-release disability support services have been associated with reduced recidivism, most likely through mechanisms such as improved housing stability, mental health and social integration. This study aimed to further this literature by exploring predictors of receiving disability support after release from prison in adults with intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This retrospective cohort study analysed linked health and administrative data from New South Wales, Australia, to identify predictors of post-release disability support. Discrete-time survival analysis was used, incorporating variables such as age, gender, Aboriginal status and comorbid conditions. Insights from lived experience consultants with intellectual disability and incarceration histories were integrated to enhance our understanding of the findings and implications.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 1868 individuals with intellectual disability were released from custody in New South Wales between 2005 and 2015 and included in this study. Of these, 49.1% received disability support services in the year following release. Older age, mental illness and substance use were associated with a lower likelihood of receiving support, whilst autism, history of self-harm and higher socio-economic status were linked to increased support. These findings are evident of ‘cycling’ (repeated incarceration), ‘complexity’ (overlapping needs), ‘acuteness’ (health service contact) and ‘resources’ (social and financial) effects in shaping access to post-release support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings reflect the challenge presented by the complex needs of those with intellectual disability who are justice-involved. The harmful and perpetuating nature of repeated incarceration for those with intellectual disability must be recognized and responded to. Targeted release planning is needed to improve disability support service receipt, particularly for those who have served long or repeated sentences and those with complex co-occurring mental health needs, with financial and social resource enhancement being ideal additional targets for intervention.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"76-86"},"PeriodicalIF":2.0,"publicationDate":"2025-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145523620","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}
Carol Curtin, Aviva Must, Misha Eliasziw, Linda G. Bandini
<div> <section> <h3> Background</h3> <p>Children with intellectual disabilities are at increased risk for obesity compared to their typically developing counterparts. However, little work has been done to determine whether and how parental feeding styles and parental feeding practices may be associated with obesity in this population of children.</p> </section> <section> <h3> Methods</h3> <p>Fifty-nine typically developing children and 56 children with intellectual disabilities ages 3–8 years participated in the Children's Mealtime Study to compare parental feeding styles and practices and their association with obesity. Parents completed a demographic and medical questionnaire, the Caregiver Feeding Styles Questionnaire and the Comprehensive Feeding Practices Questionnaire. Children's height and weight were measured using a portable stadiometer and digital scale.</p> </section> <section> <h3> Results</h3> <p>The prevalence of obesity was higher in children with intellectual disabilities than in typically developing children (31.5% vs. 13.6%, respectively, <i>p</i> = 0.02). There were no differences in parental feeding styles between parents of children with intellectual disabilities and typically developing children. An ‘indulgent’ feeding style (low demandingness/high responsiveness) was associated with obesity in typically developing children but not in children with intellectual disabilities. Relative to feeding practices, parents of children with intellectual disabilities were more likely than parents of typically developing children to restrict food for weight control (<i>p</i> = 0.003), allow child control over eating (<i>p</i> = 0.005) and use food for emotion regulation (<i>p</i> = 0.01). Parents of typically developing children were more likely to encourage balance and variety (<i>p</i> = 0.02), exert pressure to eat (<i>p</i> = 0.007), teach about nutrition (<i>p</i> < 0.001) and involve their children in meal planning/preparation (<i>p</i> < 0.001) than parents of children with intellectual disabilities. Several feeding practices were significantly related to obesity, but none differed between children with intellectual disabilities and typically developing children. In particular, restriction for weight control and restriction for health were positively related to obesity whereas pressure and involvement were inversely related to obesity.</p> </section> <section> <h3> Conclusions</h3> <p>Parental feeding style was not associated with obesity in children with intellectual disabilities, which may suggest that weight status in this population is affected by other factors. Although there were differences between som
{"title":"Parental Feeding Styles, Parental Feeding Practices and Obesity Among Children With and Without Intellectual Disabilities","authors":"Carol Curtin, Aviva Must, Misha Eliasziw, Linda G. Bandini","doi":"10.1111/jir.70059","DOIUrl":"10.1111/jir.70059","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual disabilities are at increased risk for obesity compared to their typically developing counterparts. However, little work has been done to determine whether and how parental feeding styles and parental feeding practices may be associated with obesity in this population of children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Fifty-nine typically developing children and 56 children with intellectual disabilities ages 3–8 years participated in the Children's Mealtime Study to compare parental feeding styles and practices and their association with obesity. Parents completed a demographic and medical questionnaire, the Caregiver Feeding Styles Questionnaire and the Comprehensive Feeding Practices Questionnaire. Children's height and weight were measured using a portable stadiometer and digital scale.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The prevalence of obesity was higher in children with intellectual disabilities than in typically developing children (31.5% vs. 13.6%, respectively, <i>p</i> = 0.02). There were no differences in parental feeding styles between parents of children with intellectual disabilities and typically developing children. An ‘indulgent’ feeding style (low demandingness/high responsiveness) was associated with obesity in typically developing children but not in children with intellectual disabilities. Relative to feeding practices, parents of children with intellectual disabilities were more likely than parents of typically developing children to restrict food for weight control (<i>p</i> = 0.003), allow child control over eating (<i>p</i> = 0.005) and use food for emotion regulation (<i>p</i> = 0.01). Parents of typically developing children were more likely to encourage balance and variety (<i>p</i> = 0.02), exert pressure to eat (<i>p</i> = 0.007), teach about nutrition (<i>p</i> < 0.001) and involve their children in meal planning/preparation (<i>p</i> < 0.001) than parents of children with intellectual disabilities. Several feeding practices were significantly related to obesity, but none differed between children with intellectual disabilities and typically developing children. In particular, restriction for weight control and restriction for health were positively related to obesity whereas pressure and involvement were inversely related to obesity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parental feeding style was not associated with obesity in children with intellectual disabilities, which may suggest that weight status in this population is affected by other factors. Although there were differences between som","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"87-96"},"PeriodicalIF":2.0,"publicationDate":"2025-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145431632","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}
扫码关注我们
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号