{"title":"SSBP 26th International Research Symposium, Bali, Indonesia: Abstracts for presentation","authors":"","doi":"10.1111/jir.13174","DOIUrl":"10.1111/jir.13174","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 9","pages":"1015-1025"},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017767","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}
T. I. Winarni, A. Utari, N. Maharani, T. A. Sumekar, N. R. B. Sihombing, R. J. Hagerman
{"title":"Early identification and treatment of genetic and neurodevelopmental disorders","authors":"T. I. Winarni, A. Utari, N. Maharani, T. A. Sumekar, N. R. B. Sihombing, R. J. Hagerman","doi":"10.1111/jir.13175","DOIUrl":"10.1111/jir.13175","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 9","pages":"1007-1009"},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017765","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":"SSBP 26th International Research Symposium, Bali, Indonesia: Keynote Abstracts for presentation","authors":"","doi":"10.1111/jir.13173","DOIUrl":"10.1111/jir.13173","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 9","pages":"1010-1014"},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017766","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}
A. Franze, T. Loetscher, N. C. Gallomarino, A. Szpak, G. Lee, S. C. Michalski
Background
People with intellectual disability (ID) demonstrate persistent challenges around developing life skills. Immersive virtual reality (IVR) is gaining interest as a tool for training life skills as it enables individuals to engage in hands-on learning in a safe, controlled and repeatable environment. However, there are concerns about the potential drawbacks of IVR, such as cybersickness and practical challenges with using the equipment, which may hinder its widespread adoption in educational settings. The current study aimed to compare the effectiveness of training in IVR and a non-immersive virtual environment for improving real-world skills in people with ID.
Methods
In the present study, 36 adults (16 female, 20 male) with ID were recruited from a disability organisation. Participants completed a real-world assessment of waste management skills before and after training in either the IVR or non-immersive group.
Results
Consistent with our hypotheses, the IVR group scored significantly higher in the real-world assessment after virtual training (d = 1), and at the 1-week follow-up (d = 1.12), compared with the non-immersive group. Further analyses showed that the IVR group, but not the non-immersive group, significantly improved performance in the real-world assessment across timepoints.
Conclusions
The findings indicate that IVR was more effective for improving and retaining real-world waste management skills. This study supports IVR as a viable tool for professionals and caregivers to develop skills for independent living among people with ID.
{"title":"Immersive virtual reality is more effective than non-immersive devices for developing real-world skills in people with intellectual disability","authors":"A. Franze, T. Loetscher, N. C. Gallomarino, A. Szpak, G. Lee, S. C. Michalski","doi":"10.1111/jir.13177","DOIUrl":"10.1111/jir.13177","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability (ID) demonstrate persistent challenges around developing life skills. Immersive virtual reality (IVR) is gaining interest as a tool for training life skills as it enables individuals to engage in hands-on learning in a safe, controlled and repeatable environment. However, there are concerns about the potential drawbacks of IVR, such as cybersickness and practical challenges with using the equipment, which may hinder its widespread adoption in educational settings. The current study aimed to compare the effectiveness of training in IVR and a non-immersive virtual environment for improving real-world skills in people with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In the present study, 36 adults (16 female, 20 male) with ID were recruited from a disability organisation. Participants completed a real-world assessment of waste management skills before and after training in either the IVR or non-immersive group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Consistent with our hypotheses, the IVR group scored significantly higher in the real-world assessment after virtual training (<i>d</i> = 1), and at the 1-week follow-up (<i>d</i> = 1.12), compared with the non-immersive group. Further analyses showed that the IVR group, but not the non-immersive group, significantly improved performance in the real-world assessment across timepoints.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings indicate that IVR was more effective for improving and retaining real-world waste management skills. This study supports IVR as a viable tool for professionals and caregivers to develop skills for independent living among people with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 12","pages":"1358-1373"},"PeriodicalIF":2.1,"publicationDate":"2024-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13177","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017764","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}
M. J. de Leeuw, M. N. Böhmer, M. J. G. Leening, J. A. Kors, P. J. E. Bindels, A. Oppewal, D. A. M. Maes-Festen
Background
Older adults with intellectual disabilities (ID) have a high risk of cardiovascular diseases (CVD). At the same time, challenging diagnostic work-up increases the likelihood of underdiagnosis of CVD in this population. To limit this underdiagnosis, it would be beneficial to use objective measures such as the electrocardiogram (ECG). However, little is known about the feasibility of ECG recording and the prevalence of ECG abnormalities in this population. Therefore, the aims of this study were to investigate the feasibility of resting ECG recording, to study the prevalence of ECG abnormalities, and to compare the frequency of ECG abnormalities with medical records in older adults with ID.
Method
A cross-sectional study was performed within a cohort of older adults (≥60 years) with ID as part of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. A resting 12-lead ECG was attempted, and the ECG recording was considered feasible if the recording could be made and if the ECG could be interpreted by a cardiologist and the Modular ECG Analysis System (MEANS). ECGs were assessed for the presence of ECG abnormalities and medical record review was performed. If the cardiologist or MEANS concluded that there was evidence of myocardial infarction, atrial fibrillation or QTc prolongation on the ECG in the absence of this ECG diagnosis in the participant's medical record, this was classified as a previously undiagnosed ECG diagnosis.
Results
ECG recording was feasible in 134 of the 200 participants (67.0%). Of these 134 participants (70.6 ± 5.8 years; 52.2% female), 103 (76.9%) had one or more ECG abnormality, with the most prevalent being prolonged P-wave duration (27.6%), QTc prolongation (18.7%), minor T-wave abnormalities (17.9%), first degree atrioventricular block (12.7%) and myocardial infarction (6.7%). Eight out of 9 (88.9%) myocardial infarctions and all cases of (significant) QTc prolongation (100%) were previously undiagnosed.
Conclusions
This study showed that ECG recording is feasible in the majority of older adults with ID and revealed a substantial underdiagnosis of ECG abnormalities. These results stress the importance of ECG recording and warrant further research into the yield of opportunistic ECG screening in older adults with ID.
{"title":"Feasibility and findings of electrocardiogram recording in older adults with intellectual disabilities: results of the Healthy Ageing and Intellectual Disabilities study","authors":"M. J. de Leeuw, M. N. Böhmer, M. J. G. Leening, J. A. Kors, P. J. E. Bindels, A. Oppewal, D. A. M. Maes-Festen","doi":"10.1111/jir.13181","DOIUrl":"10.1111/jir.13181","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Older adults with intellectual disabilities (ID) have a high risk of cardiovascular diseases (CVD). At the same time, challenging diagnostic work-up increases the likelihood of underdiagnosis of CVD in this population. To limit this underdiagnosis, it would be beneficial to use objective measures such as the electrocardiogram (ECG). However, little is known about the feasibility of ECG recording and the prevalence of ECG abnormalities in this population. Therefore, the aims of this study were to investigate the feasibility of resting ECG recording, to study the prevalence of ECG abnormalities, and to compare the frequency of ECG abnormalities with medical records in older adults with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A cross-sectional study was performed within a cohort of older adults (≥60 years) with ID as part of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. A resting 12-lead ECG was attempted, and the ECG recording was considered feasible if the recording could be made and if the ECG could be interpreted by a cardiologist and the Modular ECG Analysis System (MEANS). ECGs were assessed for the presence of ECG abnormalities and medical record review was performed. If the cardiologist or MEANS concluded that there was evidence of myocardial infarction, atrial fibrillation or QTc prolongation on the ECG in the absence of this ECG diagnosis in the participant's medical record, this was classified as a previously undiagnosed ECG diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>ECG recording was feasible in 134 of the 200 participants (67.0%). Of these 134 participants (70.6 ± 5.8 years; 52.2% female), 103 (76.9%) had one or more ECG abnormality, with the most prevalent being prolonged P-wave duration (27.6%), QTc prolongation (18.7%), minor T-wave abnormalities (17.9%), first degree atrioventricular block (12.7%) and myocardial infarction (6.7%). Eight out of 9 (88.9%) myocardial infarctions and all cases of (significant) QTc prolongation (100%) were previously undiagnosed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study showed that ECG recording is feasible in the majority of older adults with ID and revealed a substantial underdiagnosis of ECG abnormalities. These results stress the importance of ECG recording and warrant further research into the yield of opportunistic ECG screening in older adults with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 12","pages":"1344-1357"},"PeriodicalIF":2.1,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13181","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141988112","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}
L. Friedman, C. Moser, A. J. Thurman, J. L. Taylor, L. Abbeduto, J. Klusek
<div> <section> <h3> Background</h3> <p>Self-determination refers to setting goals and making decisions regarding one's own life with support from others as needed. Research on people with intellectual and developmental disabilities has established the importance of self-determination for quality of life outcomes, such as increased independence and life satisfaction. However, self-determination has not been characterised specifically in fragile X syndrome (FXS), the leading inherited cause of intellectual disability. Relative to youth with other forms of intellectual and developmental disabilities, youth with FXS may face exceptional barriers to the development of self-determined behaviour. In addition to intellectual disability, the FXS behavioural profile is characterised by high rates of autism and anxiety that may further limit opportunities for youth with FXS. The heritable nature of the condition can also yield a distinctive family environment, with siblings and parents also living with fragile X or its associated conditions. Considering these unique challenges, the present study examined self-determination in young adult males and females with FXS and explored whether factors such as language skills, adaptive behaviour and autism traits were associated with self-determination capacity and opportunities.</p> </section> <section> <h3> Methods</h3> <p>The present study included 9 females and 36 males with FXS between the ages of 17 and 25 years. Caregivers (mothers or fathers) completed the American Institute for Research Self-Determination Assessment, which is a questionnaire that yields three scores: self-determination capacity, opportunities for self-determination at home and opportunities for self-determination at school.</p> </section> <section> <h3> Results</h3> <p>Caregivers endorsed a wide range of self-determination capacity and opportunities, with ratings for opportunities at home and school exceeding ratings of capacity. Better adaptive behaviour skills were associated with more self-determination capacity, and the presence of more autism traits was associated with fewer opportunities at school.</p> </section> <section> <h3> Conclusions</h3> <p>Results from this study contribute to our understanding of avenues to best support young adults with FXS as they transition to adulthood. Our findings also have implications for practice, such that interventions targeting adaptive behaviours and self-determination may be an effective approach for promoting autonomy and independence for young adults with FXS. Additionally, caregivers and educat
背景：自决是指在他人的必要支持下，为自己的生活设定目标并做出决定。对智力和发育障碍人士的研究已经证实，自我决定对提高生活质量具有重要意义，例如提高独立性和生活满意度。然而，对于脆性 X 综合症（FXS）这种导致智力残疾的主要遗传病因，人们还没有专门研究过他们的自决能力。与患有其他形式智力和发育障碍的青少年相比，患有脆性 X 射线综合症的青少年在发展自我决定行为方面可能面临特殊障碍。除智力障碍外，FXS 行为特征的另一个特点是自闭症和焦虑症的高发率，这可能会进一步限制 FXS 患者的机会。这种疾病的遗传性还可能导致独特的家庭环境，因为兄弟姐妹和父母也患有脆性 X 或相关疾病。考虑到这些独特的挑战，本研究考察了患有 FXS 的年轻成年男性和女性的自我决定能力，并探讨了语言技能、适应行为和自闭症特征等因素是否与自我决定能力和机会相关：本研究包括 9 名女性和 36 名男性 FXS 患者，年龄在 17 岁至 25 岁之间。照顾者（母亲或父亲）填写了美国研究所自决评估问卷，该问卷可得出三项评分：自决能力、在家中的自决机会和在学校的自决机会：照顾者对自决能力和自决机会的认可范围很广，对家庭和学校自决机会的评分超过了对自决能力的评分。较好的适应行为技能与较高的自决能力相关，而较多的自闭症特征与较少的在校机会相关：这项研究的结果有助于我们了解如何在 FXS 青少年向成年过渡的过程中为他们提供最佳支持。我们的研究结果还对实践产生了影响，例如，针对适应行为和自我决定的干预措施可能是促进 FXS 青少年自主和独立的有效方法。此外，照顾者和教育者应继续为他们提供实践自我决定的机会，无论他们对自己能力的认知如何。
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M. Rouleaux, N. Peters-Scheffer, R. Lindauer, L. Mevissen, R. Didden
<div> <section> <h3> Background</h3> <p>Stressful life events are events that do not fulfil the A criterion of PTSD in the DSM-5(TR) but are perceived as negative by the person. There is an ongoing debate about the usefulness of the A criterion as a gate criterion for PTSD, and especially regarding which events qualify as traumatic or stressful life events. This debate is particularly important for individuals with intellectual disabilities (ID) or borderline intellectual functioning (BIF), as they seem to be more likely to experience traumatic and stressful life events than their peers without ID-BIF and appear to be more susceptible to the disruptive effects of these events. As a result, people with ID-BIF are more likely to develop mental health and behavioural problems. There is insufficient knowledge about how the relationship between stressful life events and PTSD symptoms should be interpreted, how traumatic and stressful life events are defined and distinguished in people with ID, and whether the A criterion should be broadened for individuals with ID-BIF. The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF.</p> </section> <section> <h3> Methods</h3> <p>The scoping review was conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).</p> </section> <section> <h3> Results</h3> <p>Thirty-eight studies were included. Five studies focused on stressful life events and PTSD symptoms. The other studies examined associations between stressful life events and other mental health and/or behavioural problems. Most of the studies did not clearly differentiate between stressful and traumatic events according to the A criterion of PTSD in the DSM-IV (TR) or DSM-5(TR). Of the six studies in which stressful life events were specified and could be distinguished from traumatic events, one found a positive association between PTSD symptoms and stressful life events and five showed weak to strong positive associations with other mental health and/or behavioural problems.</p> </section> <section> <h3> Conclusions</h3> <p>PTSD symptoms following stressful life events in individuals with ID-BIF are underrepresented in the literature. The lack of a clear definition of stressful life events leads to a gap in the knowledge on whether and how stressful life events may lead to PTSD symptoms, other mental he
背景：应激性生活事件是指不符合 DSM-5（TR）中创伤后应激障碍 A 标准，但被患者视为负面的事件。关于 A 标准作为 PTSD 门槛标准的实用性，特别是关于哪些事件符合创伤性或应激性生活事件的标准，一直存在争论。这一争论对于智障（ID）或边缘智力功能（BIF）患者尤为重要，因为他们似乎比没有智障-边缘智力功能的同龄人更有可能经历创伤性和压力性生活事件，而且似乎更容易受到这些事件的破坏性影响。因此，ID-BIF 患者更容易出现心理健康和行为问题。对于如何解释生活压力事件与创伤后应激障碍症状之间的关系，如何定义和区分 ID 患者的创伤性和生活压力事件，以及是否应扩大 ID-BIF 患者的 A 级标准，目前还缺乏足够的了解。本范围综述旨在了解生活压力事件及其与ID-BIF患者的创伤后应激障碍症状、其他心理健康和/或行为问题之间的关系：范围界定综述根据 JBI 范围界定综述方法和范围界定综述系统综述和荟萃分析扩展首选报告项目（PRISMA-ScR）进行：共纳入 38 项研究。其中五项研究侧重于生活压力事件和创伤后应激障碍症状。其他研究则探讨了生活压力事件与其他心理健康和/或行为问题之间的关联。大多数研究并没有根据 DSM-IV（TR）或 DSM-5（TR）中创伤后应激障碍的 A 标准明确区分压力事件和创伤事件。在明确指出生活压力事件并可将其与创伤事件区分开来的六项研究中，一项研究发现创伤后应激障碍症状与生活压力事件呈正相关，五项研究发现创伤后应激障碍症状与其他心理健康和/或行为问题呈弱到强的正相关：结论：ID-BIF 患者在生活压力事件后出现的创伤后应激障碍症状在文献中的代表性不足。由于缺乏对压力性生活事件的明确定义，因此在有关压力性生活事件是否以及如何导致ID-BIF患者出现创伤后应激障碍症状、其他心理健康和/或行为问题的知识方面存在空白。因此，对于创伤后应激障碍A标准是否适合ID-BIF患者，还不能做出一般性结论或建议。专家临床经验研究表明，应考虑为ID-BIF患者扩大创伤后应激障碍A标准的适用范围，因此需要开展进一步研究，以确定应激性生活事件在创伤后应激障碍症状中的作用，并为ID-BIF患者的评估和有效治疗提供依据。
{"title":"Stressful life events, post-traumatic stress disorder symptoms and mental health in individuals with intellectual disabilities: a scoping review","authors":"M. Rouleaux, N. Peters-Scheffer, R. Lindauer, L. Mevissen, R. Didden","doi":"10.1111/jir.13178","DOIUrl":"10.1111/jir.13178","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Stressful life events are events that do not fulfil the A criterion of PTSD in the DSM-5(TR) but are perceived as negative by the person. There is an ongoing debate about the usefulness of the A criterion as a gate criterion for PTSD, and especially regarding which events qualify as traumatic or stressful life events. This debate is particularly important for individuals with intellectual disabilities (ID) or borderline intellectual functioning (BIF), as they seem to be more likely to experience traumatic and stressful life events than their peers without ID-BIF and appear to be more susceptible to the disruptive effects of these events. As a result, people with ID-BIF are more likely to develop mental health and behavioural problems. There is insufficient knowledge about how the relationship between stressful life events and PTSD symptoms should be interpreted, how traumatic and stressful life events are defined and distinguished in people with ID, and whether the A criterion should be broadened for individuals with ID-BIF. The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The scoping review was conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirty-eight studies were included. Five studies focused on stressful life events and PTSD symptoms. The other studies examined associations between stressful life events and other mental health and/or behavioural problems. Most of the studies did not clearly differentiate between stressful and traumatic events according to the A criterion of PTSD in the DSM-IV (TR) or DSM-5(TR). Of the six studies in which stressful life events were specified and could be distinguished from traumatic events, one found a positive association between PTSD symptoms and stressful life events and five showed weak to strong positive associations with other mental health and/or behavioural problems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>PTSD symptoms following stressful life events in individuals with ID-BIF are underrepresented in the literature. The lack of a clear definition of stressful life events leads to a gap in the knowledge on whether and how stressful life events may lead to PTSD symptoms, other mental he","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 10","pages":"1087-1113"},"PeriodicalIF":2.1,"publicationDate":"2024-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13178","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141916944","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}
K. Van Deusen, M. A. Prince, M. M. Walsh, A. J. Esbensen, L. R. Patel, M. E. Pinks, A. J. Thurman, L. Abbeduto, L. A. Daunhauer, D. J. Fidler
Background
Adaptive behaviour refers to the practical skills necessary for independence and is considered a high-priority intervention target for children with neurogenetic conditions associated with intellectual disability, like Down syndrome (DS). Daily living skills (DLS) are a critical aspect of adaptive behaviour, but they have received little intervention attention, possibly because they involve a wide variety of skills across many settings. The present study aimed to advance DLS intervention science by examining the concurrent and longitudinal association between DLS performances and a cognitive skillset hypothesised to support DLS skill acquisition, executive function (EF).
Methods
Participants were 71 children with DS between the ages of 2.5 and 8.7 years (M = 5.23 years; standard deviation = 1.65) who completed a battery of adapted EF tasks and a primary caregiver who completed the Vineland Adaptive Behavior Scales 3rd Edition Parent/Caregiver Comprehensive Report Form. A subset of caregivers also provided 6- and 12-month follow-up adaptive behaviour information.
Results
Results demonstrated a positive association between EF task performance and DLS standard scores and v-scores both concurrently and longitudinally.
Conclusions
The findings have implications for potential future intervention approaches that aim to strengthen DLS performances by advancing EF skills in this population.
{"title":"Laboratory-based measures of executive function and daily living skills in young children with Down syndrome: informing future interventions","authors":"K. Van Deusen, M. A. Prince, M. M. Walsh, A. J. Esbensen, L. R. Patel, M. E. Pinks, A. J. Thurman, L. Abbeduto, L. A. Daunhauer, D. J. Fidler","doi":"10.1111/jir.13176","DOIUrl":"10.1111/jir.13176","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adaptive behaviour refers to the practical skills necessary for independence and is considered a high-priority intervention target for children with neurogenetic conditions associated with intellectual disability, like Down syndrome (DS). Daily living skills (DLS) are a critical aspect of adaptive behaviour, but they have received little intervention attention, possibly because they involve a wide variety of skills across many settings. The present study aimed to advance DLS intervention science by examining the concurrent and longitudinal association between DLS performances and a cognitive skillset hypothesised to support DLS skill acquisition, executive function (EF).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were 71 children with DS between the ages of 2.5 and 8.7 years (M = 5.23 years; standard deviation = 1.65) who completed a battery of adapted EF tasks and a primary caregiver who completed the Vineland Adaptive Behavior Scales 3rd Edition Parent/Caregiver Comprehensive Report Form. A subset of caregivers also provided 6- and 12-month follow-up adaptive behaviour information.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Results demonstrated a positive association between EF task performance and DLS standard scores and <i>v</i>-scores both concurrently and longitudinally.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings have implications for potential future intervention approaches that aim to strengthen DLS performances by advancing EF skills in this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 11","pages":"1301-1315"},"PeriodicalIF":2.1,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13176","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141901966","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}
Individuals with intellectual disability, including people with Down syndrome (DS), often exhibit restricted and repetitive behaviours (RRBs). However, RRBs have not been deeply characterised in children and adolescents with DS.
Method
The study encompassed a cohort of 151 participants aged 4 to 18 years with DS. RRBs were assessed utilising the Repetitive Behaviour Scale-Revised. Additionally, data pertaining to cognitive and adaptive functioning, linguistic abilities, sleep patterns and emotional/behavioural issues were gathered.
Results
Self-injurious behaviours were reported less frequently whereas parents most commonly endorsed items related to behaviours associated with the need for sameness and ritualistic behaviours. We observed very few gender differences, whereas some age-related differences emerged, with adolescents exhibiting higher scores in items related with higher-level RRBs. The analysis of the association between RRBs and clinical features revealed that RRBs were associated with parent-reported sleep difficulties, as well as with internalising and externalising problems. We also observed a negative correlation with IQ whereas associations with adaptive skills emerged mainly for lower-level RRBs, such as motor stereotypies. Finally, RRBs were negatively associated with linguistic abilities, both expressive and receptive.
Conclusions
RRBs in children and adolescents with DS are of significant clinical interest due to their associations with various clinical dimensions. Therefore, psychological and neuropsychiatric assessment should include an accurate evaluation of RRBs for young people with DS.
{"title":"Characterising repetitive behaviours in children and adolescents with Down syndrome","authors":"E. Fucà, F. Costanzo, S. Vicari","doi":"10.1111/jir.13179","DOIUrl":"10.1111/jir.13179","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disability, including people with Down syndrome (DS), often exhibit restricted and repetitive behaviours (RRBs). However, RRBs have not been deeply characterised in children and adolescents with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The study encompassed a cohort of 151 participants aged 4 to 18 years with DS. RRBs were assessed utilising the Repetitive Behaviour Scale-Revised. Additionally, data pertaining to cognitive and adaptive functioning, linguistic abilities, sleep patterns and emotional/behavioural issues were gathered.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Self-injurious behaviours were reported less frequently whereas parents most commonly endorsed items related to behaviours associated with the need for sameness and ritualistic behaviours. We observed very few gender differences, whereas some age-related differences emerged, with adolescents exhibiting higher scores in items related with higher-level RRBs. The analysis of the association between RRBs and clinical features revealed that RRBs were associated with parent-reported sleep difficulties, as well as with internalising and externalising problems. We also observed a negative correlation with IQ whereas associations with adaptive skills emerged mainly for lower-level RRBs, such as motor stereotypies. Finally, RRBs were negatively associated with linguistic abilities, both expressive and receptive.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>RRBs in children and adolescents with DS are of significant clinical interest due to their associations with various clinical dimensions. Therefore, psychological and neuropsychiatric assessment should include an accurate evaluation of RRBs for young people with DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 11","pages":"1287-1300"},"PeriodicalIF":2.1,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13179","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893571","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}
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