Journal of Intellectual Disability Research最新文献_第4页

The Power of ECHO Autism: Improving Confidence and Holistic Care for Autistic Adults 回声自闭症的力量：提高自信和对自闭症成年人的整体护理。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-12-10 DOI: 10.1111/jir.70069

Nancy Cheak-Zamora, Jessica Smith, Mya Howard, Beth Malow, Kristin Sohl, Micah Mazurek

Background

Autistic adults describe difficulties accessing high-quality primary care services. Primary care practitioners (PCPs) report a lack of confidence and knowledge in working with autistic adults. The Extension for Community Healthcare Outcomes (ECHO) model is a longitudinal clinician education program that utilises a ‘hub and spoke’ model, community-building strategies and peer case-based learning to improve the care of patients with medical complexity.

Methods

The present study utilised the ECHO model (‘ECHO Autism Adult Healthcare’) to train PCPs in how to best care for autistic adults. We used a qualitative approach to examine the PCPs' subjective experiences of participating in the training. We used a qualitative descriptive framework to explore the experiences of 22 PCPs who completed the ECHO Autism Adult Healthcare program. Semi-structured Zoom interviews examined the support and education needs of PCPs and the benefits and challenges of the program. Three researchers worked collaboratively to code transcripts, testing inter-rater reliability to establish reliability and coding consistency.

Results

Four themes were identified: (1) the benefits of hearing from a wide range of perspectives, (2) establishing and supporting an interactive and engaging climate, (3) building a sense of community and (4) the meaningfulness and usability of resources and information. Overall, participants appreciated the multidisciplinary hub team members' expertise, especially those with lived experiences. Several participants enjoyed the ECHO format, as it encourages active discussion and engagement. PCPs indicated that they felt connected with the hub team and participants. They remarked on the usefulness of provided resources and their ability to implement them into clinical care.

Conclusion

These results can guide the development and implementation of future training programs. The ECHO model has the potential to become a best practice for delivering medical education. Broad implementation of the ECHO model shows significant benefits for PCPs and patients with medical complexity compared to more traditional forms of CME.

背景：自闭症成人描述了获得高质量初级保健服务的困难。初级保健从业者（pcp）报告缺乏信心和知识与自闭症成人工作。社区医疗保健结果扩展（ECHO）模式是一项纵向临床医生教育计划，它利用“中心和辐射”模式、社区建设策略和基于同伴案例的学习来改善对医疗复杂性患者的护理。方法：本研究利用ECHO模型（“ECHO自闭症成人保健”）来培训pcp如何最好地照顾自闭症成人。我们采用了定性的方法来检验pcp参与培训的主观体验。我们使用定性描述框架来探讨22名完成ECHO自闭症成人医疗保健计划的pcp的经历。半结构化的Zoom访谈考察了pcp的支持和教育需求，以及该计划的好处和挑战。三位研究人员合作对转录本进行编码，测试评分者之间的可靠性，以建立可靠性和编码一致性。结果：确定了四个主题：(1)从广泛的角度听取意见的好处；(2)建立和支持互动和吸引人的氛围；(3)建立社区意识；(4)资源和信息的意义和可用性。总体而言，与会者赞赏多学科中心团队成员的专业知识，特别是那些有实际经验的人。一些与会者很喜欢回声会议的形式，因为它鼓励积极的讨论和参与。pcp表示，他们感到与中心团队和参与者有联系。他们评价了所提供资源的有效性，以及他们将这些资源应用于临床护理的能力。结论：这些结果可以指导未来培训方案的制定和实施。ECHO模式有潜力成为提供医学教育的最佳做法。与更传统的CME形式相比，广泛实施ECHO模型对pcp和医疗复杂性患者有显着益处。

{"title":"The Power of ECHO Autism: Improving Confidence and Holistic Care for Autistic Adults","authors":"Nancy Cheak-Zamora, Jessica Smith, Mya Howard, Beth Malow, Kristin Sohl, Micah Mazurek","doi":"10.1111/jir.70069","DOIUrl":"10.1111/jir.70069","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Autistic adults describe difficulties accessing high-quality primary care services. Primary care practitioners (PCPs) report a lack of confidence and knowledge in working with autistic adults. The Extension for Community Healthcare Outcomes (ECHO) model is a longitudinal clinician education program that utilises a ‘hub and spoke’ model, community-building strategies and peer case-based learning to improve the care of patients with medical complexity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The present study utilised the ECHO model (‘ECHO Autism Adult Healthcare’) to train PCPs in how to best care for autistic adults. We used a qualitative approach to examine the PCPs' subjective experiences of participating in the training. We used a qualitative descriptive framework to explore the experiences of 22 PCPs who completed the ECHO Autism Adult Healthcare program. Semi-structured Zoom interviews examined the support and education needs of PCPs and the benefits and challenges of the program. Three researchers worked collaboratively to code transcripts, testing inter-rater reliability to establish reliability and coding consistency.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes were identified: (1) the benefits of hearing from a wide range of perspectives, (2) establishing and supporting an interactive and engaging climate, (3) building a sense of community and (4) the meaningfulness and usability of resources and information. Overall, participants appreciated the multidisciplinary hub team members' expertise, especially those with lived experiences. Several participants enjoyed the ECHO format, as it encourages active discussion and engagement. PCPs indicated that they felt connected with the hub team and participants. They remarked on the usefulness of provided resources and their ability to implement them into clinical care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>These results can guide the development and implementation of future training programs. The ECHO model has the potential to become a best practice for delivering medical education. Broad implementation of the ECHO model shows significant benefits for PCPs and patients with medical complexity compared to more traditional forms of CME.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"274-286"},"PeriodicalIF":2.0,"publicationDate":"2025-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872374/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145723665","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}

引用次数: 0

Feasibility, Test–Retest Reliability and Convergent Validity of the Two-Minute Step Test in Older Adults With Intellectual Disabilities 老年人智障两分钟步测验的可行性、重测信度及收敛效度。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-12-08 DOI: 10.1111/jir.70070

M. M. A. de Bondt, T. I. M. Hilgenkamp, A. Oppewal

Background

Cardiorespiratory fitness is a crucial component for health. However, measuring cardiorespiratory fitness in older adults with intellectual disabilities (ID) in practice and in large-scale studies remains challenging. The Two-Minute Step Test (2MST) is a submaximal cardiorespiratory fitness test that is brief, relatively easy to perform, and does not require any expensive materials. However, the clinimetric properties of the 2MST for older adults with ID are unknown. Therefore, this study aimed to determine the feasibility, reliability and convergent validity of the 2MST in older adults with ID.

Method

This was a cross-sectional study within the ‘Healthy Ageing and Intellectual Disabilities’ (HA-ID) cohort study. Participants (n = 180, 70.6 [66–75] years) that participated in the physical fitness assessment were included in this study. Feasibility was defined as a successful completion according to protocol. Test–retest reliability was assessed over two measurements, on the same day, with the intraclass correlation coefficient (ICC). Convergent validity was assessed relative to other fitness components (static balance, muscular endurance, comfortable and fast gait speed), with Pearson's and Spearman's correlation coefficients.

Results

The 2MST showed moderate feasibility for the first (49.4%) and second (48.3%) measurement. Feasibility was good in participants with borderline, mild and moderate ID (57.1%–80%), but low in participants with severe (15.2%) and profound ID (7.7%). Test–retest reliability was excellent (ICC = 0.88). The 2MST had a moderate correlation with static balance (r = 0.46) and comfortable (r = 0.42) and fast (r = 0.51) gait speed, and a good correlation with muscular endurance (r = 0.63). Based on predefined criteria, all correlations were at least moderate (r > 0.30), supporting good convergent validity (categorised as good if three or more out of four correlations were at least moderate).

Conclusions

The 2MST is a feasible, reliable and valid test to use in older adults with ID. Feasibility was especially good in older adults with borderline to moderate ID; however, it was low in adults with more severe ID. The excellent test–retest reliability and good indications for convergent validity show this test is a suitable field test for cardiorespiratory fitness to use in older adults with ID.

背景：心肺健康是健康的重要组成部分。然而，在实践和大规模研究中测量老年人智力残疾（ID）的心肺健康仍然具有挑战性。两分钟步数测试（2MST）是一种亚极限心肺功能测试，简单易行，不需要任何昂贵的材料。然而，老年ID患者的2MST的临床特性尚不清楚。因此，本研究旨在确定2MST在老年ID患者中的可行性、信度和收敛效度。方法：这是一项“健康老龄化与智力残疾”（HA-ID）队列研究中的横断面研究。本研究纳入参加体质评估的参与者（n = 180,70.6[66-75]岁）。可行性定义为根据协议成功完成。用类内相关系数（ICC）在同一天对两次测量进行重测信度评估。相对于其他健身成分（静态平衡、肌肉耐力、舒适和快速步态速度）评估收敛效度，使用Pearson和Spearman相关系数。结果：2MST对第一次测量（49.4%）和第二次测量（48.3%）具有中等的可行性。边缘型、轻度和中度ID的可行性较好（57.1% ~ 80%），重度和重度ID的可行性较低（15.2% ~ 7.7%）。重测信度极好（ICC = 0.88）。2MST与静态平衡（r = 0.46）、舒适（r = 0.42）、快速（r = 0.51）步速有中等相关性，与肌肉耐力（r = 0.63）有较好的相关性。基于预定义的标准，所有相关性至少是中等的（r > 0.30），支持良好的收敛效度（如果四个相关性中有三个或更多至少是中等的，则归类为良好）。结论：2MST是一种可行、可靠、有效的老年ID检测方法。在边缘性到中度ID的老年人中，可行性特别好；然而，在更严重的成人中，这一比例较低。该测试具有良好的重测信度和良好的收敛效度指征，是一种适合用于老年ID患者的心肺适能现场测试。

{"title":"Feasibility, Test–Retest Reliability and Convergent Validity of the Two-Minute Step Test in Older Adults With Intellectual Disabilities","authors":"M. M. A. de Bondt, T. I. M. Hilgenkamp, A. Oppewal","doi":"10.1111/jir.70070","DOIUrl":"10.1111/jir.70070","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Cardiorespiratory fitness is a crucial component for health. However, measuring cardiorespiratory fitness in older adults with intellectual disabilities (ID) in practice and in large-scale studies remains challenging. The Two-Minute Step Test (2MST) is a submaximal cardiorespiratory fitness test that is brief, relatively easy to perform, and does not require any expensive materials. However, the clinimetric properties of the 2MST for older adults with ID are unknown. Therefore, this study aimed to determine the feasibility, reliability and convergent validity of the 2MST in older adults with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This was a cross-sectional study within the ‘Healthy Ageing and Intellectual Disabilities’ (HA-ID) cohort study. Participants (<i>n</i> = 180, 70.6 [66–75] years) that participated in the physical fitness assessment were included in this study. Feasibility was defined as a successful completion according to protocol. Test–retest reliability was assessed over two measurements, on the same day, with the intraclass correlation coefficient (ICC). Convergent validity was assessed relative to other fitness components (static balance, muscular endurance, comfortable and fast gait speed), with Pearson's and Spearman's correlation coefficients.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The 2MST showed moderate feasibility for the first (49.4%) and second (48.3%) measurement. Feasibility was good in participants with borderline, mild and moderate ID (57.1%–80%), but low in participants with severe (15.2%) and profound ID (7.7%). Test–retest reliability was excellent (ICC = 0.88). The 2MST had a moderate correlation with static balance (r = 0.46) and comfortable (r = 0.42) and fast (r = 0.51) gait speed, and a good correlation with muscular endurance (r = 0.63). Based on predefined criteria, all correlations were at least moderate (r > 0.30), supporting good convergent validity (categorised as good if three or more out of four correlations were at least moderate).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The 2MST is a feasible, reliable and valid test to use in older adults with ID. Feasibility was especially good in older adults with borderline to moderate ID; however, it was low in adults with more severe ID. The excellent test–retest reliability and good indications for convergent validity show this test is a suitable field test for cardiorespiratory fitness to use in older adults with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"287-294"},"PeriodicalIF":2.0,"publicationDate":"2025-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872370/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145701186","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}

引用次数: 0

Reliability of Actigraphy for the Assessment of Sleep and Circadian Rhythms in Rett and Related Syndromes 活动描记术评估Rett及相关综合征患者睡眠和昼夜节律的可靠性。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-12-04 DOI: 10.1111/jir.70068

Breanne Byiers, Alyssa Merbler, Elijah Lockhart, Chantel Burkitt, Frank Symons

Purpose

Actigraphy is being increasingly used to assess sleep and circadian rhythms among populations with intellectual and developmental disabilities and genetic syndromes, including Rett syndrome and related disorders, but the reliability of these measures in these populations is unclear. The primary purpose of the current study was to evaluate the impact of recording duration on the reliability of various measures of sleep and circadian rhythm in Rett and related syndromes.

Method

Two 14-day recordings were collected between 4 and 12 weeks apart in a sample of 30 individuals (aged 2–36 years; 97% female). Reliability was estimated by calculating statistics based on 3, 5, 7, 10 or 13–14 nights of recording.

Results

Most measures of average sleep quality could be reliably estimated with 7–10 nights. Measures of night-to-night variability in sleep timing showed poor reliability at all recording durations, whereas night-to-night variability in sleep duration showed adequate reliability at 5–7 days of recording. The reliability of measures of circadian rhythm was highly variable.

Conclusions

The results suggest that the optimal recording durations for actigraphy in this population vary based on the specific metrics of interest, but most can be measured reliably.

目的：活动描记术越来越多地用于评估智力和发育障碍以及遗传综合征（包括Rett综合征和相关疾病）人群的睡眠和昼夜节律，但这些测量方法在这些人群中的可靠性尚不清楚。本研究的主要目的是评估记录时间对Rett及相关综合征中各种睡眠和昼夜节律测量的可靠性的影响。方法：选取30例（年龄2-36岁，97%为女性），每隔4- 12周采集两次14天录音。通过计算3、5、7、10或13-14晚记录的统计量来估计可靠性。结果：大多数平均睡眠质量指标可以用7-10个晚上可靠地估计出来。睡眠时间的夜间变异性测量在所有记录持续时间内都显示出较差的可靠性，而睡眠持续时间的夜间变异性在记录的5-7天内显示出足够的可靠性。昼夜节律测量的可靠性变化很大。结论：结果表明，在该人群中，活动记录仪的最佳记录时间根据特定的指标而变化，但大多数可以可靠地测量。

{"title":"Reliability of Actigraphy for the Assessment of Sleep and Circadian Rhythms in Rett and Related Syndromes","authors":"Breanne Byiers, Alyssa Merbler, Elijah Lockhart, Chantel Burkitt, Frank Symons","doi":"10.1111/jir.70068","DOIUrl":"10.1111/jir.70068","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Actigraphy is being increasingly used to assess sleep and circadian rhythms among populations with intellectual and developmental disabilities and genetic syndromes, including Rett syndrome and related disorders, but the reliability of these measures in these populations is unclear. The primary purpose of the current study was to evaluate the impact of recording duration on the reliability of various measures of sleep and circadian rhythm in Rett and related syndromes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Two 14-day recordings were collected between 4 and 12 weeks apart in a sample of 30 individuals (aged 2–36 years; 97% female). Reliability was estimated by calculating statistics based on 3, 5, 7, 10 or 13–14 nights of recording.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Most measures of average sleep quality could be reliably estimated with 7–10 nights. Measures of night-to-night variability in sleep timing showed poor reliability at all recording durations, whereas night-to-night variability in sleep duration showed adequate reliability at 5–7 days of recording. The reliability of measures of circadian rhythm was highly variable.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results suggest that the optimal recording durations for actigraphy in this population vary based on the specific metrics of interest, but most can be measured reliably.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"262-273"},"PeriodicalIF":2.0,"publicationDate":"2025-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872378/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145668733","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}

引用次数: 0

Reliability and Validity of Questionnaires to Assess Communication Skills in People With Intellectual Disabilities: A Systematic Review. 评估智障人士沟通技巧问卷的信度与效度：系统回顾。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-12-01 DOI: 10.1111/jir.70063

Catriona Windsor, Kari-Anne Bottegård Næss, Melanie Kirmess, Stijn Deckers, Natalie Ballentine, Sangwon Yoon, Renée Speyer

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.

背景：评估智力残疾个体的沟通是必要的，但由于结构的复杂性和有限的心理测量学可靠工具的可用性，具有挑战性。本综述旨在评估用于该人群的沟通问卷的效度和可靠性。方法：按照PRISMA 2020指南和COSMIN定义进行效度和信度的系统评价。五个数据库（Cinahl, Embase, Eric， PsycINFO和PubMed）检索了2000年至2024年发表的研究。纳入标准要求用问卷评估智障人士的沟通能力，并报告其效度或信度。使用QualSyst工具评价方法学质量。结果：5项研究中描述的6份问卷和3份手册符合纳入标准。效度证据比信度证据更常被报道，尽管两者的记录并不一致。没有问卷显示出全面的效度或信度评估。内容有效性经常受到缺乏涉众参与的限制。结论：目前的调查问卷显示有希望，但需要进一步验证。未来的研究应优先考虑利益相关者的参与、内容和结构有效性，以确保包容性、可靠性的沟通评估。普洛斯彼罗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}

引用次数: 0

Vocabulary and Syntactic Development in Japanese Children With Autism Spectrum Disorder and Down Syndrome Accompanied by Intellectual Disability 日本自闭症谱系障碍和唐氏综合症伴智力残疾儿童的词汇和句法发展。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-12-01 DOI: 10.1111/jir.70062

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.

背景：智力残疾儿童的形态和句法发育明显滞后。本研究旨在建立自闭症谱系障碍（ASD）和唐氏综合征（DS）儿童与典型发育儿童（TD）在控制Tanaka-Binet智力量表v定义的心理年龄（MA）的情况下词汇和句法发展之间的联系。方法：被试为ID儿童（N = 33），其中14例为ASD， 19例为DS；年龄（CA）在9 - 17岁之间，MA在4岁以上。TD患儿（N = 28） CA为5年。对被试进行词汇理解、词汇表达、句法理解和句法表达四个方面的评估。我们研究了词汇和句法之间的组内差异和组内关联。结果：虽然在词汇理解和表达方面没有显著差异，但ASD和DS患儿在句法理解和表达任务上的表现明显低于ma匹配的TD患儿。两组都表现出在需要理解语法语素和语法知识的语法项目上的困难。结论：两组患儿的词汇发展与TD患儿相似；然而，考虑到他们的MA和词汇发展，他们的句法发展低于预期。在日本自闭症儿童的教育和临床实践中，建立和检查专注于语法，特别是语法形态学的方法是很重要的。

{"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}

引用次数: 0

Comorbidities in People With Intellectual Disability With and Without Schizophrenia and Schizophrenia Without Intellectual Disability: A Swedish Register Study (IDcare) 智力残疾者伴和不伴精神分裂症及伴智力残疾的精神分裂症的合并症：瑞典登记研究（IDcare）。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-30 DOI: 10.1111/jir.70067

Trine Lise Bakken, Anna Axmon, Magnus Sandberg

Background

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.

背景：已知智力残疾（ID）和精神分裂症分别具有精神健康和身体状况共病的高风险。然而，迄今为止，在诊断为ID和精神分裂症并发的人群中，共病的患病率和风险尚未得到研究。方法：选取瑞典sk地区所有人群，分为三组：(1)ID合并精神分裂症患者；(2)ID合并精神分裂症患者；(3)ID合并精神分裂症患者。诊断是使用区域sk医疗保健数据库确定的。泊松回归分别用于估计组1与组2和组3在每个ICD-10章节或块中至少有一个诊断的相对风险（rr）， 95%置信区间（ci）。所有分析均根据纳入时的年龄（即2014年，连续变量）、性别和种族进行调整。结果：在一些诊断章节中，与无精神分裂症的有精神分裂症和有精神分裂症但无精神分裂症的有精神分裂症的人相比，有精神分裂症的人有更高的风险。这些章节包括以下内容：I（寄生虫），III（血液和免疫），IV（内分泌），VII（眼睛），XII（皮肤和组织）和XIV（泌尿生殖系统）。与其他两组相比，风险最高的是糖尿病、其他内分泌腺疾病、肥胖和其他高营养、器质性疾病（包括症状和精神健康状况）、锥体外系疾病和运动以及其他主要影响间质的呼吸系统疾病。结论：ID和精神分裂症合并的人出现身体和精神健康状况的风险增加，而这些状况无法单独用ID或精神分裂症来解释。对精神分裂症合并患者的正确诊断对于提供适当的治疗非常重要。未来的研究应该调查途径和解释因素，以及为ID和精神分裂症患者提供服务。

{"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}

引用次数: 0

Young People With and Without Intellectual Disability Accessing Mental Health Services: Evaluating Psychosocial Functioning Outcomes Using Electronic Health Records 有和没有智力残疾的年轻人获得精神卫生服务：使用电子健康记录评估心理社会功能结果。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-29 DOI: 10.1111/jir.70066

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.

背景：越来越多的人认识到许多年轻人（方法：从南伦敦和莫兹利NHS基金会信托（2001-2023）的电子健康记录中提取了1986年对有身份证的年轻人的护理数据和3968次对没有身份证的年轻人的匹配数据）。使用儿童整体评估量表（CGAS）评估心理社会功能。结果：ID经常与其他神经发育疾病和行为困难共同发生（患病率为50%）。入职时CGAS评分正预测出院时CGAS评分；然而，这种关联在存在ID和共同发生的广泛性发育障碍或多动障碍时减弱。与没有ID的患者相比，ID患者出院时的CGAS评分较低。在ID组中，患有严重/深度ID和合并症的年轻人比仅患有严重/深度ID的年轻人表现出更大的改善率。20%的年轻ID患者出院时表现出显著的临床改善（可靠变化指数≥1.96）。尽管有这种改善，但同一组中80%的人继续经历严重的损害(CGAS结论：大多数患有ID的年轻人在出院时仍然严重受损，突出了他们需求的复杂性和持续的、有针对性的支持的重要性。进一步的研究应该检查这一人群的具体干预类型和治疗轨迹。

{"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}

引用次数: 0

Perceived Vulnerability and Parents' Views on Intimate Relationships: Adults With Intellectual Disabilities Versus Their Siblings 感知脆弱性与父母对亲密关系的看法：智障成人与兄弟姐妹。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-25 DOI: 10.1111/jir.70061

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.

背景：智力残疾的成年人在形成浪漫/亲密关系方面面临独特的障碍，包括被贴上“脆弱成年人”的标签。父母通常更多地参与到有本我的成年子女的生活中，包括亲密关系。这种参与既可以支持也可以限制自主和亲密关系的发展。了解父母如何看待和应对孩子的脆弱性是至关重要的，因为这些看法可以直接影响孩子在恋爱和亲密关系中获得的机会和支持。本研究的目的是探讨父母对脆弱性的感知如何影响他们参与有本我的成年子女与无本我的成年子女的亲密关系体验。方法：作为一项更大的融合混合方法研究的一部分，20名父母参加了半结构化访谈，他们的成年子女患有身份证，而成年子女没有身份证。对这些访谈的定性数据进行了二次数据分析，以检查与脆弱性对经历的影响有关的主题。结果：与没有本我的成年子女相比，父母认为有本我的成年子女更脆弱，导致讨论性行为的时间推迟，担忧加剧，更直接地参与到他们的关系体验中。他们还描述了在保护行为和培养独立性之间取得平衡的努力。结论：研究结果强调了父母面临的微妙挑战，包括社会规范、沟通障碍以及成年子女的认知和适应功能，所有这些都加剧了他们对脆弱性的感知。这些观念反过来又塑造了父母参与成年子女恋爱和亲密关系的程度和性质。这项研究强调需要父母的支持、资源和规划来促进有ID的成年人安全、充实的浪漫和亲密关系体验。

{"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}

引用次数: 0

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 幼儿自闭症谱系障碍的二级筛查：跨文化适应与幼儿行为发展筛查的验证（BeDevel）

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-25 DOI: 10.1111/jir.70064

Kaiyan Gan, Bei Sun, Guiyoung Bong, Qian Li, Yuan Chen, Nana Qiu, Anqi Huang, Ziyi Zhang, Zenghe Yue, Hee Jeong Yoo, Xiaoyan Ke

Background

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.

背景：近年来，自闭症谱系障碍（ASDs）的早期筛查工具取得了很大进展。BeDevel是一种全面而精确的筛查工具，它解决了其他筛查工具中的许多缺点，包括文化适应性有限和灵敏度不足。因此，我们进一步分析了它的文化适应性和有效性。方法：我们与原开发团队合作，将BeDevel翻译成中文。在委员会的指导下，我们对BeDevel进行了语义和文化上的修改，以评估其跨文化适应性。我们收集了542名参与者的验证数据（9-11个月，n = 24； 12-17个月，n = 61； 18-23个月，n = 136； 24-35个月，n = 217； 36-42个月，n = 104）。该研究包括191名ASD患者，103名DD患者和248名TD患者。分析单项和总分的内部一致性、与临床诊断的一致性（得出最佳分值、敏感性、特异性、阳性预测值[PPV]和阴性预测值[NPV]）以及与现有诊断工具的一致性。结果：中文版bedev - i /P量表的Cronbach's α平均系数均大于0.8(0.872 ~ 0.93)，相关系数均大于0.05 （r = 0.061 ~ 0.834）。各年龄组诊断准确率指标如下：κ系数为0.064-0.722；敏感性,0.853 - -0.962;特异性,0.429 - -1.000;PPV, 0.758 - -1.000;净现值为0.700 ~ 0.974。仪器间一致性的κ值在0.432 ~ 0.973之间，所有仪器间一致性的κ值均超过60%。结论：中文版BeDevel在筛查自闭症方面具有较高的可靠性和有效性。因此，我们推荐这种经过验证的C-BeDevel用于临床和妇幼保健机构的2级ASD筛查。

{"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}

引用次数: 0

Measuring Muscle Mass in Adults With Intellectual Disabilities: The Reliability and Construct Validity of Calf Circumference 智力残疾成人肌肉质量测量：小腿围的信度和结构效度。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-15 DOI: 10.1111/jir.70060

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}

引用次数: 0