Journal of Intellectual Disability Research最新文献

{"title":"Autonomic Function in Fragile X Syndrome: A Systematic Review","authors":"Sydni Weissgold,&nbsp;Sarah E. A. Eley,&nbsp;Damien Wright,&nbsp;Andrew G. McKechanie,&nbsp;Andrew C. Stanfield","doi":"10.1111/jir.70106","DOIUrl":"10.1111/jir.70106","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Fragile X syndrome (FXS) is a monogenic X-linked cause of intellectual disability and autism. Individuals with FXS often have high levels of anxiety and sometimes display challenging behaviours. Autonomic dysfunction has been suggested to be one physiological mechanism that may contribute to these. Therefore, the objective of this review is to systematically examine existing evidence on autonomic function in FXS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>An electronic literature search was conducted on OVID platforms (Medline, Embase and PsycINFO) and Web of Knowledge databases for references published before 22 April 2025, which physiologically measured autonomic function in FXS. A preregistered search strategy was designed to gather literature on the autonomic nervous system in FXS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 1426 articles were identified, and 28 studies met the inclusion criteria. Samples comprised individuals across the lifespan (ages &lt; 1–71 years), with most studies utilising a case control design to examine indices of autonomic function; 75% of studies found a between-group difference in autonomic function metrics. Of these studies, hyperarousal in the FXS group was present in 86% (<i>N</i> = 18) of studies. Although some studies reported associations of autonomic function with clinical characteristics, findings varied considerably between studies. There was some evidence of potential differences between genders, although more research in female populations is required.</p>\u0000 \u0000 <p>Of the 28 included studies, 64% (<i>N</i> = 18) further examined links between autonomic function and clinical characteristics associated with FXS, demonstrating links between relevant clinical symptoms, that is, autistic traits and hyperarousal, as well as potential gender differences in autonomic function.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings demonstrate evidence for autonomic hyperarousal as a clinical phenotype in FXS across the lifespan. Future work is required to define whether overactivation of the sympathetic nervous system, as indicated by hyperarousal in FXS, can be linked to clinical symptoms. Variations in sample demographics as well as in methodological approaches to measuring autonomic function both hinder accurate comparison of the results from included studies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 8","pages":"773-787"},"PeriodicalIF":2.4,"publicationDate":"2026-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70106","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147774033","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":"Predictors of Mental Healthcare Need and Utilisation Among Asian American Adolescents With Intellectual and Developmental Disabilities.","authors":"Kayla K Van, Chin-Chih Chen, Ruth C Brown","doi":"10.1111/jir.70131","DOIUrl":"10.1111/jir.70131","url":null,"abstract":"<p><strong>Background: </strong>Adolescence is a period of high risk for the onset of mental health disorders. In the general population, approximately one in five children and adolescents experience a mental health disorder each year. Various research has shown that Asian Americans have the lowest amount of mental healthcare utilisation among all minority groups in the United States, obtaining treatment at less than half the rate compared to other racial-ethnic groups. Past studies have found that Asian children with special healthcare needs (CSHCN) experience poorer quality healthcare compared to non-Hispanic Whites. However, little is known about mental healthcare needs and utilisation rates among Asian American adolescents with intellectual and developmental disabilities (I/DD).</p><p><strong>Method: </strong>Data were acquired from the 2016-2020 National Survey of Children's Health (NSCH), provided by the Data Resource Center for Child & Adolescent Health (www.childhealthdata.org). Linear models and logistic regression analysis were performed to investigate the intersection of race and I/DD, family and social determinants, parent-reported need for mental healthcare and, if needed, receipt of mental healthcare in Asian American adolescents with I/DD.</p><p><strong>Results: </strong>Asian American, non-Hispanic children with I/DD had higher odds of needing mental healthcare compared to White American, non-Hispanic children with I/DD. Social determinants, particularly family structure, non-primary English households, poverty level and insurance adequacy, contribute to the decline in needing and obtaining mental healthcare for children with I/DD.</p><p><strong>Conclusion: </strong>Adolescents with I/DD in the United States experience racial/ethnic disparities in mental healthcare. The findings from this suggest the need to investigate further into the intersection of race/ethnicity and I/DD in mental healthcare and the creation of policies that promote equitable access to mental healthcare services for adolescents with I/DD, especially for minority individuals.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148368693","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":"Cognitive and Demographic Associations of Dementia-Related Behavioural Changes in Adults With an Intellectual Disability: Findings From the IDS-TILDA Study","authors":"Marie-Joelle Beaudoin,&nbsp;Pavithra Pavithra,&nbsp;Mary McCarron,&nbsp;Philip McCallion,&nbsp;Antoinette O'Connnor,&nbsp;Sean Kennelly,&nbsp;Shoumitro Deb,&nbsp;Eimear McGlinchey","doi":"10.1111/jir.70128","DOIUrl":"10.1111/jir.70128","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities (ID) are at an increased risk of developing dementia. Early detection is essential for providing appropriate support, yet identifying dementia-related changes is challenging due to pre-existing cognitive impairments. Informant-based adapted tools have been developed to support dementia screening in individuals with ID. Among those, the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) aims to assess behavioural and functional changes related to dementia. This study aimed to examine the associations between the DSQIID total scores, cognitive performance and demographic characteristics of adults with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This cross-sectional study included 322 individuals with ID (<i>n</i> Down syndrome [DS] = 55; <i>n</i> non-DS ID = 267). Behavioural and functional changes were assessed using the DSQIID, whereas cognitive functioning was measured with the Test for Severe Impairment (TSI), Brief Praxis Test (BPT) and a semantic verbal fluency task. Negative binomial regression analyses were conducted to explore associations between DSQIID total scores and selected demographic and cognitive variables.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Age was significantly associated with behavioural dementia-related changes, as assessed by the DSQIID, whereas ID severity was not associated. Results further showed that participants with DS had significantly higher scores on the DSQIID compared to participants with ID without DS. Higher DSQIID scores were significantly associated with higher semantic verbal fluency performance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings suggest that caregivers may more readily detect behavioural and functional changes in adults with ID who exhibit relatively good verbal capacities. This study underscores the elevated risk of dementia in adults with DS and highlights the importance of supporting caregivers in recognizing early signs of dementia in adults with ID who exhibit lower verbal capacities. The findings underscore the importance of monitoring behavioural, functional and cognitive changes over time. Further research is needed to explore the associations between reported dementia-related changes and the severity of ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 8","pages":"871-880"},"PeriodicalIF":2.4,"publicationDate":"2026-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70128","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148271876","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":"Hyponatraemia in Patients With Severe Motor and Intellectual Disabilities: Possible Role of Antiseizure Medications.","authors":"Miyoko Tokushima, Goro Yokota, Chika Ueno, Yukiko Inada, Kumiko Jinnouchi, Miki Nakanishi, Shuichi Yamamoto","doi":"10.1111/jir.70127","DOIUrl":"https://doi.org/10.1111/jir.70127","url":null,"abstract":"<p><strong>Background: </strong>Chronic hyponatraemia is highly prevalent in older adults and is associated with various adverse health outcomes; however, its prevalence among individuals with severe motor and intellectual disability (SMID) remains unclear. This study aimed to determine the prevalence of hyponatraemia in hospitalized patients with SMID and to identify potential contributing factors.</p><p><strong>Methods: </strong>We retrospectively analysed serum sodium (sNa) levels in patients with SMID admitted to our hospital. Hyponatraemia was defined as an sNa level < 135 mEq/L. Demographic and clinical data, including age, sex, body weight, nutritional management and medication status, were collected. Serum concentrations of antiseizure medications (ASMs) were evaluated in patients receiving these treatments.</p><p><strong>Results: </strong>A total of 122 patients were included. The primary diagnoses were cerebral palsy (57.3%), sequelae of intracranial infection (11.4%), hypoxic encephalopathy (10.7%), drug-resistant epilepsy (9.0%), sequelae of intracranial haemorrhage (4.9%) and congenital disorders including chromosomal abnormalities (6.5%). Hyponatraemia was identified in 22 patients (18.0%). Epilepsy was present in 112 patients, and 93 were receiving ASM therapy. No significant association was observed between hyponatraemia and primary diagnosis. However, univariate analyses revealed that the use of multiple ASMs was significantly associated with hyponatraemia (p = 0.028). Multiple regression analysis demonstrated that higher serum levels of carbamazepine (p < 0.0001) and phenytoin (p = 0.0026) were significantly associated with lower sNa levels.</p><p><strong>Conclusions: </strong>In our hospital, 18% of patients with SMID exhibited hyponatraemia. Careful monitoring of serum sodium levels is warranted in patients with SMID and epilepsy treated with carbamazepine or phenytoin.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2026-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148199244","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":"Effectiveness of Interventions to Increase Physical Activity and Reduce Sedentary Behaviour in Children and Adolescents With Intellectual Disabilities: A Systematic Review and Meta-Analysis of Randomized Controlled Trials","authors":"Aiwei Wang,&nbsp;Poyong Yan,&nbsp;Wei Tuo,&nbsp;Yagang Song,&nbsp;Yang Gao,&nbsp;Chenxi Liu,&nbsp;Danran Bu","doi":"10.1111/jir.70093","DOIUrl":"10.1111/jir.70093","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children and adolescents with intellectual disabilities often do not meet the recommended guidelines for physical activity (PA) and sedentary behaviour (SB). Evidence-based recommendations for effective interventions are lacking. This study aimed to review existing interventions and identify effective components for this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A systematic search of Web of Science, Medline, ERIC, Ovid and SPORTDiscus was conducted from their inception to February 2023, to identify eligible articles according to a series of inclusion and exclusion criteria. The Revised Tool to Assess Risk of Bias in Randomized Trials (RoB 2.0) was used to assess risk of bias in the included studies. The random-effects model was used to pool the weighted results and the <i>I</i>² statistic was applied to assess heterogeneity of the included studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Five randomized controlled trials were included in this review. Regarding intervention components, four trials exclusively used exercise, whilst the other one combined exercise with health education and diet. The meta-analysis demonstrated that interventions were effective at increasing PA (3.73 min, <i>Z</i> = 4.44, 95% CI [2.09, 5.38], <i>p</i> &lt; 0.00001) and decreasing SB (−15.31 min, <i>Z</i> = 2.59, 95% CI [−26.90, −3.72], <i>p</i> = 0.01), compared with control groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Exercise was an effective intervention component in promoting PA and reducing SB in children and adolescents with intellectual disabilities. The findings of this study provided preliminary evidence for decision-making in PA promotion and SB reduction in the target population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"678-687"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70093","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146258358","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":"Correction to ‘Reliability of the Dutch Version of the Matson Evaluation of Drug Side Effects in People With Intellectual Disabilities’","authors":"","doi":"10.1111/jir.70107","DOIUrl":"10.1111/jir.70107","url":null,"abstract":"<p>\u0000 <span>Hoekstra-van Duijn, M.</span>, <span>Wissing, M.</span>, <span>Bindels, P.</span>, and <span>Maes-Festen, D.</span> (<span>2025</span>) <span>Reliability of the Dutch Version of the Matson Evaluation of Drug Side Effects in People With Intellectual Disabilities</span>. <i>Journal of Intellectual Disability Research</i>, <span>69</span>: <span>703</span>–<span>710</span>. https://doi.org/10.1111/jir.13256.</p><p>In paragraph 3.1 of the Results section of the published article, the following text is incorrect.</p><p>Medication data other than antipsychotic medication were missing in three participants. Of the remaining 37 participants, nine participants (24.3%) were prescribed antiepileptics, and six participants (16.2%) were using psychoanaleptics.</p><p>The correct text is provided below.</p><p>Medication data other than antipsychotic medication were missing in four participants. Of the remaining 36 participants, nine participants (25.0%) were prescribed antiepileptics, and six participants (16.7%) were using psychoanaleptics.</p><p>We apologize for this error.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":""},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70107","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147774044","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":"Correction to “The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review”","authors":"","doi":"10.1111/jir.70115","DOIUrl":"10.1111/jir.70115","url":null,"abstract":"<p>\u0000 <span>vanBeurden, K.</span>, <span>Vereijken, F. R.</span>, <span>Frielink, N.</span>, and <span>Embregts, P. J. C. M.</span> (<span>2025</span>) <span>The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review</span>. <i>Journal of Intellectual Disability Research</i>, <span>69</span>: <span>1</span>–<span>29</span>. https://doi.org/10.1111/jir.13199.</p><p>In the published article's Study Selection section, the following sentences are incorrect:</p><p>First, in the identification phase, a total of 31 514 studies were retrieved from the seven databases. Next, in the screening phase, after removing 13 705 duplicates, the titles and abstracts of the remaining 17 809 studies were independently screened by six researchers based on the inclusion criteria outlined in Table 2.</p><p>The correct details are shown below:</p><p>First, in the identification phase, a total of 13 843 studies were retrieved from the seven databases. Next, in the screening phase, after removing 6643 duplicates, the titles and abstracts of the remaining 7200 studies were independently screened by six researchers based on the inclusion criteria outlined in Table 2.</p><p>Additionally, Figure 1 is incorrect. The correct Figure 1 is shown below:</p><p>We apologize for these errors.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"770-771"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70115","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147838877","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":"Labour of Love: A Sequential Exploratory Mixed-Methods Study on the Impact of Caring for a Child With Dravet Syndrome","authors":"Amber Postma,&nbsp;Megan Milota,&nbsp;Marian J. Jongmans,&nbsp;Eva H. Brilstra,&nbsp;Janneke R. Zinkstok","doi":"10.1111/jir.70113","DOIUrl":"10.1111/jir.70113","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Dravet syndrome (DS) is a rare genetic epilepsy syndrome, characterized by refractory seizures, delayed development, intellectual disability and behavioural difficulties. Caring for a child with DS can negatively affect parents' mental well-being. Therefore, this study aimed to (1) explore experiences of parents caring for a child with DS; and (2) assess distress and empowerment in these parents and the interplay between these aspects.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used a sequential exploratory mixed-method design. We conducted focus groups with parents of children/adults with DS, analysed these data through iterative coding to identify themes and used the Distress Thermometer for parents (DT-P) and the Dutch Family Empowerment Scale (FES) for quantitative measures. Results were validated in a final focus group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty parents participated in focus groups and 65 completed questionnaires. Four themes emerged: handling the unpredictable behaviour of a child with DS, attending to one's mental health needs and well-being, adjusting life and accepting changes to meet the child's needs and struggles navigating the (health)care system. Quantitative analyses showed a significant correlation between higher parental empowerment and lower distress, and more behavioural difficulties in their child with DS and higher parental distress.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parental distress is high, especially for those parenting a child with DS and behavioural difficulties. Effective management of these issues and enhancing empowerment can improve overall family well-being.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"746-757"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70113","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147774006","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":"Parental Support and Physical Activity in Children With Intellectual Disabilities: The Moderating Role of Parenting Styles","authors":"Kewang Yao,&nbsp;Xudong Yang,&nbsp;Xiaohuan Tan,&nbsp;Lei Zhang,&nbsp;Xueping Wu","doi":"10.1111/jir.70112","DOIUrl":"10.1111/jir.70112","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Drawing on Darling and Steinberg's integrative model of parenting, this study investigated the influence of parental support (companionship and modelling) on the physical activity levels of children with intellectual disabilities, with a specific focus on the moderating role of different parenting styles.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A cross-sectional survey was conducted using a convenience sample of 191 parents of children with ID in China. Data were collected via parental support scales, the short form of the International Physical Activity Questionnaire (IPAQ-S) and a parenting style questionnaire. Hierarchical regression analysis was employed to test the main effects of parental support, and the PROCESS macro (Model 1) with the bootstrap method was used to examine the moderating effects of parenting styles.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Both parental companionship (B = 865.62, <i>p</i> &lt; 0.001) and parental modelling (B = 829.79, <i>p</i> &lt; 0.001) were significant positive predictors of children's physical activity levels. Moderating effect analyses revealed that a democratic parenting style significantly enhanced the positive effects of parental support. In contrast, an inconsistent parenting style significantly weakened the positive effect of parental modelling (Coeff = −579.22, <i>p</i> = 0.007). The interaction with parental companionship showed a similar negative trend but was marginally significant (<i>p</i> = 0.057), indicating a need for further verification. Other nondemocratic parenting styles (authoritarian, permissive and indulgent) showed no significant moderating effects.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parental support is a key predictor of physical activity in children with intellectual disabilities, but its effectiveness is significantly moderated by the family's parenting context. A democratic parenting style acts as a ‘catalyst’, optimizing the impact of supportive behaviours, whereas an inconsistent parenting style acts as an ‘inhibitor’, particularly weakening the effectiveness of role modelling. The findings suggest that health promotion interventions for this population should adopt a dual-focused strategy: guiding parents to provide specific support behaviours while simultaneously fostering a democratic and consistent parenting climate.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"734-745"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147838856","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":"Development and Validation of a Cross-Dimensional Screening Protocol for Remote Phenotyping Applied to Individuals With 3q29 Deletion Syndrome","authors":"R. M. Pollak,&nbsp;E. Sefik,&nbsp;C. Klaiman,&nbsp;M. K. Harner,&nbsp;D. V. Bishop,&nbsp;J. R. Purcell,&nbsp;T. Irving,&nbsp;C. A. Saulnier,&nbsp;S. Pulver,&nbsp;J. F. Cubells,&nbsp;E. F. Walker,&nbsp;M. M. Murphy,&nbsp;J. G. Mulle","doi":"10.1111/jir.70116","DOIUrl":"10.1111/jir.70116","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Advances in genomics have resulted in a rapid expansion of the number of known rare genetic disorders (RGDs). However, the low frequency of RGDs presents a challenge for accurately describing the phenotypic spectrum of a given disorder. Remote phenotyping strategies are uniquely poised to address this knowledge gap. Here, we have piloted remote evaluation of cognitive ability and psychosis spectrum symptoms in 3q29 deletion syndrome (3q29del), a hallmark RGD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Individuals with 3q29del (<i>n</i> = 21, 57% male, mean age = 14.3 ± 8.6 years) were remotely evaluated using the Penn Computerized Neurocognitive Battery (Penn-CNB), Peabody Picture Vocabulary Test (PPVT) and the Structured Interview for Prodromal Syndromes (SIPS). Scores were compared with prior in-person IQ testing results and SIPS scores from our previously published study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Remote cognitive assessment using the Penn-CNB and the PPVT accurately captured full-scale IQ (<i>r</i> = 0.710, <i>p</i> = 0.001) and verbal IQ (<i>r</i> = 0.637, <i>p</i> = 0.003), respectively, as compared with in-person assessment with gold-standard instruments. Psychosis spectrum symptoms measured using the SIPS were significantly correlated between in-person and remote evaluations (total score <i>r</i> = 0.753, <i>p</i> = 0.003; positive domain score <i>r</i> = 0.806, <i>p</i> = 0.0009).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Based on the successful pilot, we designed a protocol for remote phenotyping of individuals with 3q29del. The phenotyping battery is comprised of caregiver-report and direct assessments to capture the spectrum of neurodevelopmental, neuropsychiatric and medical features associated with the 3q29 deletion. While we focused on specific areas of concern for 3q29del, the high degree of phenotypic overlap between 3q29del and other RGDs renders this protocol amenable for implementation across a variety of RGDs, facilitating a deeper understanding of the phenotypic spectrum and cross-disorder comparison. Ultimately, we hope that the increased utilization of remote phenotyping strategies will help to expand our understanding of RGDs at large, which will lead to improved clinical management strategies and better long-term outcomes for affected individuals and their families.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"758-768"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70116","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147838939","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}