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Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England 与作为脑瘫儿童护理伙伴的家长共同设计复杂的治疗干预措施:英格兰基于经验的共同设计研究。
IF 2.9 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-06-25 DOI: 10.1016/j.ridd.2024.104793
Jill Massey , Vicki Tsianakas , Anne Gordon , Natalie Sadler , Glenn Robert

Background

Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child’s intervention delivery.

Methods and procedures

Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions.

Outcomes and results

Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session.

Conclusions and implications

Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.

背景:偏瘫型脑瘫患儿的家长越来越多地参与到治疗干预的实施过程中。加强对家长在治疗过程中的支持是优化治疗效果的关键。本研究旨在完善英格兰的一项现有计划,以更好地支持家长合作参与其子女的干预治疗:方法:基于经验的共同设计(EBCD)促进了家长和治疗师之间的合作,以确定共同的改进重点并制定解决方案。研究包括 18 次访谈和 16 次共同设计会议,共有 20 名家长和 8 名治疗师参加。干预措施的开发遵循了 MRC 开发和评估复杂干预措施的框架:家长和治疗师访谈的主题为共同设计工作的优先事项设定提供了信息。出现了三个关键的共同优先事项 a) 获得康复服务;b) 促进伙伴关系;c) 家长学习。根据这些优先事项,三个由家长和治疗师组成的共同设计小组制作了 a) 家长手册;医护人员教育大纲;b) 伙伴关系原则;干预日志的改编;c) 在线家长教育课程:利用 EBCD 让家长和治疗师参与到结构化的共同设计过程中,产生了支持家长为偏瘫儿童提供治疗的创新干预措施。这种合作方法有望提高计划的实施效果和有效性。
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引用次数: 0
Arithmetic fluency and number processing skills in identifying students with mathematical learning disabilities 识别数学学习障碍学生的算术流畅性和数字处理能力。
IF 2.9 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-06-25 DOI: 10.1016/j.ridd.2024.104795
H. Hellstrand , S. Holopainen , J. Korhonen , P. Räsänen , A. Hakkarainen , M.-J. Laakso , A. Laine , P. Aunio

Background

Students with mathematical learning disabilities (MLD) struggle with number processing skills (e.g., enumeration and number comparison) and arithmetic fluency. Traditionally, MLD is identified based on arithmetic fluency. However, number processing skills are suggested to differentiate low achievement (LA) from MLD.

Aims

This study investigated the accuracy of number processing skills in identifying students with MLD and LA, based on arithmetic fluency, and whether the classification ability of number processing skills varied as a function of grade level.

Methods and procedures

The participants were 18,405 students (girls = 9080) from Grades 3–9 (ages 9–15). Students’ basic numerical skills were assessed with an online dyscalculia screener (Functional Numeracy Assessment –Dyscalculia Battery, FUNA-DB), which included number processing and arithmetic fluency as two factors.

Outcomes and results

Confirmatory factor analyses supported a two-factor structure of FUNA-DB. The two-factor structure was invariant across language groups, gender, and grade levels. Receiver operating characteristics curve analyses indicated that number processing skills are a fair classifier of MLD and LA status across grade levels. The classification accuracy of number processing skills was better when predicting MLD (cut-off < 5 %) compared to LA (cut-off < 25 %).

Conclusions and implications

Results highlight the need to measure both number processing and arithmetic fluency when identifying students with MLD.

背景:有数学学习障碍(MLD)的学生在数字处理技能(如枚举和数字比较)和算术流利性方面有困难。传统上,数学学习障碍是根据算术流畅性来识别的。目的:本研究调查了在算术流利性的基础上,数字处理技能在识别 MLD 和 LA 学生方面的准确性,以及数字处理技能的分类能力是否随年级而变化:研究对象为三至九年级(9-15 岁)的 18405 名学生(女生 = 9080 人)。学生的基本计算能力由在线计算障碍筛选器(功能性计算能力评估--计算障碍电池,FUNA-DB)进行评估,该筛选器包括数字处理和算术流畅性两个因子:确认性因子分析支持 FUNA-DB 的双因子结构。该双因素结构在不同语言组、性别和年级之间是不变的。受试者操作特征曲线分析表明,数字处理能力是对不同年级的 MLD 和 LA 状况进行公平分类的一种方法。与LA(截止值小于25%)相比,数字处理能力预测MLD(截止值小于5%)的分类准确性更高:研究结果表明,在识别患有 MLD 的学生时,需要同时测量数字处理能力和算术流畅性。
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引用次数: 0
Investigating physiological symptoms associated with mental health symptoms in youth with cerebral palsy: An observational study 调查与脑瘫青少年心理健康症状相关的生理症状:观察研究
IF 2.9 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-06-25 DOI: 10.1016/j.ridd.2024.104783
D. Testani , C.A. McMorris , C.A. Clark , H. Sanguino , E.G. Condliffe , M.E. Noel , D.C. Kopala Sibley , L.K. Brunton

Over 50 % of children and youth with cerebral palsy (CP) experience mental health challenges, with anxiety and depression most common. Youth with CP also experience several physiological symptoms such as fatigue, pain, sedentary lifestyle, and sleep disturbances that impact their daily living; however, little is known about the impact of these symptoms on mental health outcomes in these youth. This study addressed this gap and examined the individual and cumulative impacts of physiological symptoms on anxiety and depression symptoms in youth with CP. Forty youth with CP aged 8 to 18 years, and their caregiver, participated in this cross-sectional observational study. Pain, fatigue, anxiety, and depressive symptoms were measured using caregiver- and self-reported questionnaires and participants wore accelerometers for seven consecutive days, providing non-invasive physical activity and sleep pattern data. Youth with CP experienced substantial physiological symptoms and elevated anxiety and depression symptoms. Linear regression models determined that all physiological factors were predictive of caregiver-reported youth anxiety (R2 = 0.23) and youth depressive symptoms (R2 = 0.48). Fatigue, pain severity, sleep efficiency, and physical activity outcomes individually and cumulatively contributed to caregiver-reported youth anxiety and depression symptoms. These findings highlight the important role of physiological symptoms as potential risk factors and potential targets for intervention for mental health issues for in youth with CP.

50%以上的脑瘫(CP)儿童和青少年会遇到心理健康方面的挑战,其中焦虑和抑郁最为常见。患有脑瘫的青少年也会出现一些生理症状,如疲劳、疼痛、久坐不动的生活方式和睡眠障碍等,这些症状会影响他们的日常生活;然而,人们对这些症状对这些青少年心理健康结果的影响知之甚少。本研究针对这一空白,研究了生理症状对患有心绞痛的青少年焦虑和抑郁症状的个体和累积影响。40 名 8 至 18 岁的 CP 青少年及其照顾者参与了这项横断面观察研究。研究人员使用护理人员和自我报告的问卷对疼痛、疲劳、焦虑和抑郁症状进行了测量,参与者连续七天佩戴加速度计,以提供非侵入性的体力活动和睡眠模式数据。患有心绞痛的青少年有严重的生理症状,焦虑和抑郁症状也有所加重。线性回归模型表明,所有生理因素均可预测护理人员报告的青少年焦虑(R2 = 0.23)和青少年抑郁症状(R2 = 0.48)。疲劳、疼痛严重程度、睡眠效率和体力活动结果单独或共同导致了护理人员报告的青少年焦虑和抑郁症状。这些研究结果突显了生理症状作为潜在风险因素的重要作用,也是干预CP青少年心理健康问题的潜在目标。
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引用次数: 0
Vocabulary and expressive morpho-syntax in individuals with Down syndrome: Links to narration 唐氏综合症患者的词汇和表达形态句法:与叙述的联系
IF 2.9 2区 医学 Q2 Psychology Pub Date : 2024-06-21 DOI: 10.1016/j.ridd.2024.104781
Isabel Neitzel

Background

Narrative ability is crucial for social participation in everyday and school life but involves different language abilities such as vocabulary and morpho-syntax. This is particularly difficult for individuals who display both language and cognitive impairments. Previous research has identified productive vocabulary as a possible key factor for narrative performance in individuals with Down syndrome. Considering a close connection between lexical and morpho-syntactic performance within language acquisition and the distinct impairments that individuals with Down syndrome display concerning their morpho-syntactic skills, the nature of a relation between vocabulary and narrative skills under the influence of grammatical deficits requires further investigation.

Methods

Narrations were obtained from 28 children and adolescents with Down syndrome (aged 10;0–20;1) using a non-verbal picture book. Narrative abilities were rated using the Narrative Scoring Scheme across seven narrative aspects (including macro- and microstructure). Vocabulary analyses and morpho-lexical context analyses including verb and conjunction enumerations, evaluation of verb position and MLU were conducted. Findings from the transcript analysis have been supplemented with data from standardized language measures evaluating expressive lexical and morpho-syntactic development. A multiple regression analysis was conducted to identify significant predictors for narrative outcome in the participants with Down syndrome.

Results

Lexical analyses revealed a high heterogeneity in production of subordinating conjunctions as a link between lexical and morpho-syntactic abilities. Comparisons of standardized and narrative data demonstrated differences in subordinate clause production depending on the elicitation setting. A multiple regression analysis identified the number of different verbs in the narrative task as the most significant predictor for narrative performance in individuals with Down syndrome.

Discussion and implications

The findings of this study contribute to the knowledge regarding factors that influence narrative performance in individuals with language impairment. A differentiated verb lexicon can be identified as the key ability for reaching advanced narrative skills in participants with Down syndrome. These findings are of clinical relevance for therapeutic and educational support and contribute to an understanding of the relation between strengths in vocabulary and morpho-syntactic weaknesses in individuals with Down syndrome within communicative participation.

背景叙述能力对于日常和学校生活中的社会参与至关重要,但涉及不同的语言能力,如词汇和语法。这对于同时存在语言和认知障碍的人来说尤其困难。以往的研究发现,生产性词汇可能是影响唐氏综合症患者叙事能力的关键因素。考虑到语言习得中词汇和形态句法表现之间的密切联系,以及唐氏综合症患者在形态句法技能方面表现出的明显障碍,在语法缺陷的影响下,词汇和叙事技能之间关系的性质需要进一步研究。方法:使用非语言图画书从 28 名唐氏综合症儿童和青少年(10;0-20;1 岁)中获得叙事。叙事能力采用叙事评分标准(Narrative Scoring Scheme)从七个方面(包括宏观和微观结构)进行评分。还进行了词汇分析和形态词汇语境分析,包括动词和连词枚举、动词位置评估和多词组。成绩单分析的结果得到了评估表达词汇和形态句法发展的标准化语言测量数据的补充。结果词汇分析表明,作为词汇和形态句法能力之间的纽带,从属连词的产生具有高度的异质性。对标准化数据和叙事数据的比较表明,从句的产生因诱导环境的不同而存在差异。多元回归分析表明,叙事任务中不同动词的数量是预测唐氏综合症患者叙事能力的最重要因素。 讨论和启示本研究结果有助于了解影响语言障碍患者叙事能力的因素。有区别的动词词库被认为是唐氏综合症患者达到高级叙事技能的关键能力。这些发现对治疗和教育支持具有临床意义,并有助于理解唐氏综合症患者在参与交际时词汇优势与形态句法弱点之间的关系。
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引用次数: 0
Listening to the voices of adolescents with intellectual disabilities: Exploring perception of post-school transition 倾听智障青少年的心声:探索对离校后过渡的看法
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-19 DOI: 10.1016/j.ridd.2024.104770
Ghaleb H. Alnahdi , Arwa Alwadei , Susanne Schwab

Background

Life skills play a key role in the transition of a child with intellectual disabilities into a young adult. According to previous research, students with intellectual disabilities often lack such skills. However, most studies on this topic have been conducted on teachers or parents. Limited studies are available on adolescents with intellectual disabilities. Therefore, this study investigates how adolescents with disabilities perceive their competence in life skills post-school.

Method

The sample consisted of 201 adolescents with disabilities (67 % with mild intellectual disabilities and 33 % with other disabilities).

Results

The results revealed that adolescents with intellectual disabilities' perception of their life skills in all areas (independent living, personal money management, community involvement and usage, leisure activities, health, and social/interpersonal relationships) was significantly lower compared to adolescents with other disabilities. In four out of the six sub-scales, female respondents reported that their competence level in life skills was lower compared to males. In addition, adolescents with disabilities in daycare centers stated that they could establish better social and personal relationships when compared to adolescents from other schools.

背景生活技能在智障儿童向青年成人过渡的过程中起着关键作用。根据以往的研究,智障学生往往缺乏生活技能。然而,有关这一主题的大多数研究都是针对教师或家长进行的。针对智障青少年的研究则非常有限。研究结果显示,智障青少年对自己在所有领域(独立生活、个人理财、社区参与和利用、休闲活动、健康和社交/人际关系)的生活技能的认知都明显低于其他残疾青少年。在六个分量表中,有四个分量表显示,女性受访者的生活技能水平低于男性。此外,日托中心的残疾青少年表示,与其他学校的青少年相比,他们可以建立更好的社会关系和人际关系。
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引用次数: 0
Quality of life, functioning and participation of children and adolescents with visual impairment: A scoping review 视力障碍儿童和青少年的生活质量、功能和参与:范围界定审查
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-12 DOI: 10.1016/j.ridd.2024.104772
Martina Lanza , Francesca Incagli , Chiara Ceccato , Maria Eleonora Reffo , Elena Mercuriali , Francesco Parmeggiani , Emanuela Pagliano , Veronica Saletti , Matilde Leonardi , Agnese Suppiej , Hélène Dollfus , David LeBreton , Robert P. Finger , Bart Peter Leroy , Reda Zemaitiene , Katarzyna Nowomiejska , Erika Guastafierro

Background

Vision has a key role in children’s neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn.

Aims

We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed.

Methods and procedures

We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023. Outcomes and results: In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age).

Conclusions and Implications

Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time).

What this paper adds?

The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impac

背景视力对儿童的神经运动、认知和社会发展起着关键作用。目的我们进行了一次范围综述,总结了评估视力障碍对儿童和青少年生活质量、功能和参与影响的常用工具。此外,还讨论了所纳入研究的主要发现。方法和程序我们检索了 2000 年至 2023 年间对 0 至 18 岁视力受损儿童和青少年的生活质量、功能和参与情况进行评估的论文。结果与成果:共有 69 项研究符合纳入标准并被纳入综述。研究采用了儿童自我报告、照顾者代理报告和自我报告问卷以及访谈。结果表明,视力障碍儿童和青少年的生活质量、功能和参与度明显降低,其影响取决于不同的因素(如障碍的严重程度、年龄等)。结论和启示考虑到视力障碍对这一人群的生活质量、功能和参与度的重大影响,制定综合的、多维度的评估方案,评估视力障碍对这些方面的影响,并考虑到不同的生活环境(如家庭、学校、休闲时间等),是非常重要的、本综述旨在概述视力障碍对儿童和青少年生活质量、功能和参与的影响。我们从生物-心理-社会的角度出发,根据《国际功能、残疾和健康分类》(世界卫生组织,2001 年)对健康的定义,考虑了身体功能和结构、功能、参与和环境因素如何动态地相互作用,以确定一个人在生命某一时刻的健康或疾病状况。我们报告了用于评估生活质量、参与度和功能的最常用工具,特别关注 "患者报告结果测量法 "和 "自我报告测量法"。通过报告所使用的不同工具,我们对可用于临床和研究领域的现有工具进行了概述,以评估这类人群的生活质量、功能和参与度。此外,通过对现有文献的回顾,我们证明了这些方面会受到视力障碍的负面影响,因此在评估项目中应加以考虑。具体来说,有必要提供更加综合的评估方案,以调查视力障碍对儿童和青少年的社会和情感福祉、日常功能和社会关系的影响,同时考虑他们的主观体验以及照顾者、教师、医护人员和其他参与其生活的相关成年人的主观体验。此外,还必须规划和实施多维度评估计划,考虑视力障碍对生活各个领域的不同影响。
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引用次数: 0
Enhancing the quality of life of mothers of children with intellectual disabilities or Autism: The role of disability-specific support 提高智障儿童或自闭症儿童母亲的生活质量:针对残疾的支持的作用
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-12 DOI: 10.1016/j.ridd.2024.104780
Ghaleb Alnahdi

Background

A holistic approach considering the physical, emotional, and social dimensions of living with a disability is essential for developing effective support systems, policies, and interventions. The quality of life of individuals with disabilities is interrelated with the well-being of their families making family quality of life (FQOL) a crucial aspect of study.

Aims

This study explores the effects of support on FQOL among Saudi Arabian families with children diagnosed with intellectual disabilities or autism, from the perspectives of 269 mothers.

Methods and procedures

Through a survey, we examined how disability-related support correlates with FQOL, emphasizing the need for personalized support systems. We employed multiple regression analysis to assess the impact of various factors on FQOL, including the type and severity of disability, family income, and marital status.

Outcomes and Results: The findings revealed that disability-related support is a significant predictor of FQOL, highlighting its critical role in enhancing the well-being of families.

Conclusions and implications

This study contributes to the scarce regional literature, and underscores the importance of inclusive social policies tailored to the diverse needs of families with disabilities.

背景综合考虑残疾人士的身体、情感和社会层面对于制定有效的支持系统、政策和干预措施至关重要。本研究从 269 位母亲的视角出发,探讨了在沙特阿拉伯有被诊断为智障或自闭症儿童的家庭中,支持对 FQOL 的影响。方法和程序通过调查,我们研究了与残疾相关的支持与 FQOL 的相关性,强调了个性化支持系统的必要性。我们采用多元回归分析法来评估各种因素对 FQOL 的影响,包括残疾类型和严重程度、家庭收入和婚姻状况:研究结果表明,与残疾相关的支持是 FQOL 的重要预测因素,凸显了其在提高家庭福祉方面的关键作用。
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引用次数: 0
A follow-up study of peer relationships in autistic and non-autistic youths: Mediating effects from autistic, emotional and behavioral symptoms 自闭症和非自闭症青少年同伴关系的跟踪研究:自闭症、情绪和行为症状的中介效应
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-12 DOI: 10.1016/j.ridd.2024.104768
Yen-Chin Wang , Yueh-Ming Tai , Yu-Yu Wu , Yen-Nan Chiu , Wen-Che Tsai , Susan Shur-Fen Gau

Background

Little is known about how clinical features prospectively influence peer relationships in autistic populations.

Aims

This study investigated the clinical symptoms mediating the link between autism spectrum disorder (ASD) diagnosis and peer relationships at follow-up, i.e. the second time evaluation of this study.

Methods

The sample consisted of 366 autistic youths and 134 non-autistic comparisons. The autistic traits and emotional/behavioral problems were measured at baseline by Social Responsiveness Scale (SRS) and Child Behavior Checklist (CBCL). The interactions and problems with peers were assessed by the Social Adjustment Inventory for Children and Adolescents (SAICA) at follow-up.

Results

Each subscore of SRS and CBCL showed significant mediation effects. Multiple mediation analyses showed atypical social communication, social awareness problems, and delinquent behaviors mediated the link from ASD to less active peer interactions after controlling for sex, age, and IQ. Moreover, atypical social communication, social-emotional problems, and attention difficulties predicted problems with peers. After considering these mediation effects, the diagnosis of ASD still demonstrated a significantly direct effect on peer relationships at follow-up.

Conclusions and implications

Our findings support that social-related autistic features, attention problems, and delinquent behaviors mediated a link between ASD and peer relationships. These mediators are potential measures for improving interactions and decreasing difficulties with peers in the autistic population.

本研究调查了自闭症谱系障碍(ASD)诊断与随访(即本研究的第二次评估)时同伴关系之间的临床症状中介联系。自闭症特征和情绪/行为问题在基线时通过社会反应量表(SRS)和儿童行为检查表(CBCL)进行测量。结果SRS和CBCL的每个分项都显示出显著的中介效应。多重中介分析表明,在控制了性别、年龄和智商之后,非典型社会交流、社会意识问题和不良行为中介了自闭症与较不活跃的同伴交往之间的联系。此外,非典型社交沟通、社交情感问题和注意力困难也预示着与同伴交往的问题。我们的研究结果表明,与社交相关的自闭症特征、注意力问题和不良行为在自闭症和同伴关系之间起到了中介作用。这些中介因素是改善自闭症患者与同伴之间的互动和减少与同伴相处困难的潜在措施。
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引用次数: 0
Short Report: 10-year follow-up of a boy with ARID1B-related disorder. Early intervention, longitudinal dimensional phenotype, brain imaging and outcome 简短报告:一名患有ARID1B相关障碍的男孩的10年随访。早期干预、纵向维度表型、脑成像和结果
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-11 DOI: 10.1016/j.ridd.2024.104769
Jorge Mourao , Aurélie Fabre , Ingrid Zamouri , Astrid de Foucaud , Morgane Baud , Julie Brunelle , Arnold Munnich , Nathalie Boddaert , David Cohen

ARID1B-related disorders constitute a clinical continuum, from classic Coffin-Siris syndrome to intellectual disability (ID) with or without nonspecific dysmorphic features. Here, we describe an 11-year-old boy with an ARID1B mutation whose phenotype changed from severe developmental delay and ID to a complex neurodevelopmental disorder with multidimensional impairments, including normal intelligence despite heterogeneous IQ scores, severe motor coordination disorder, oral language disorder and attention-deficit/hyperactivity disorder. Phenotypic changes occurred after early intensive remediation and paralleled the normalization of myelination impairments, as evidenced by early brain imaging.

What this paper adds?

This report describes a 10-year multidisciplinary follow-up of a child with an ARID1B mutation who received early intensive remediation and whose phenotype changed during development. Clinical improvement paralleled the normalization of myelination impairments. This case supports a dimensional approach for complex neurodevelopmental disorders.

与 ARID1B 相关的疾病构成了一个临床连续体,从典型的 Coffin-Siris 综合征到伴有或不伴有非特异性畸形特征的智力残疾 (ID)。在这里,我们描述了一名患有 ARID1B 基因突变的 11 岁男孩,他的表型从严重发育迟缓和智障转变为复杂的神经发育障碍,并伴有多方面的损伤,包括智力正常(尽管智商得分不一)、严重运动协调障碍、口语障碍和注意力缺陷/多动障碍。表型的改变发生在早期强化矫正之后,与早期脑成像所显示的髓鞘化障碍正常化同时发生。临床症状的改善与髓鞘化障碍的正常化同步进行。该病例支持采用多维方法治疗复杂的神经发育障碍。
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引用次数: 0
Evaluating handwriting in children with developmental coordination disorder (DCD): Temporal, spatial, pressure and grip-force measures 评估发育协调障碍(DCD)儿童的笔迹:时间、空间、压力和握力测量法
IF 3.1 2区 医学 Q2 Psychology Pub Date : 2024-06-10 DOI: 10.1016/j.ridd.2024.104765
Rachel Bartov , Michael Wagner , Nir Shvalb , Michal Hochhauser

Background

Writing involves complex sensorimotor and biomechanical processes that regulate pressure on the writing surface. Researchers analyze writing to understand kinetics and kinematics by evaluating temporal, spatial, and pressure aspects, yet discerning writing surface pressure and pen-grip force remains challenging.

Aims

To compare handwriting kinetics (pen grip-force and surface pressure) and kinematics (temporal-spatial) of children with developmental coordination disorder (DCD) with those of typically developing (TD) children.

Methods and procedures

Twenty-seven children with DCD aged 7–12 years and 27 TD children matched by age and gender copied a 29-word passage onto a computerized tablet. Temporal, spatial and surface pressure as well as pen grip-force were measured with a tablet and a wearable device respectively.

Outcomes and results

The DCD group displayed significantly longer total writing time, mean letter time, and greater letter height, width, variance, spacing, area, and erasures than the TD group. Although there were no significant between-group differences in the surface pressure or maintaining pressure, the DCD group displayed weaker grip-force, p = .01, with greater variance.

Conclusions and implications

The DCD group's weaker grip-force dynamics correlated with reduced legibility, form, and prolonged writing duration, revealing insights into handwriting mechanisms, particularly grip force, crucial for effective clinical interventions.

背景书写涉及复杂的感觉运动和生物力学过程,这些过程调节书写表面的压力。研究人员通过评估时间、空间和压力等方面来分析书写以了解动力学和运动学,但辨别书写表面压力和握笔力仍然具有挑战性。目的比较发育协调障碍(DCD)儿童与发育正常(TD)儿童的手写动力学(握笔力和表面压力)和运动学(时间-空间)。结果DCD组的总书写时间和平均字母书写时间明显长于TD组,字母高度、宽度、方差、间距、面积和擦除次数也明显多于TD组。虽然在表面压力或保持压力方面没有明显的组间差异,但 DCD 组的握力较弱(P = 0.01),方差较大。
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Research in Developmental Disabilities
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