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Fracture Characteristics Among Adults With Intellectual Disabilities and Autism Spectrum Disorders to Inform Fracture Prevention Strategies: A Descriptive Study 成人智力障碍和自闭症谱系障碍的骨折特征为骨折预防策略提供信息：一项描述性研究。
IF 2 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-21 DOI: 10.1111/jir.13255
Sahil A. Jha, Shannen M. Bolde, Edward A. Hurvitz, Michelle S. Caird, Daniel G. Whitney

Background

Adults with intellectual disabilities (ID) and autism spectrum disorders (ASD) have a higher risk of fracture; yet little is known about key fracture characteristics that may inform fracture prevention efforts. The objective was to describe the reported activities that lead to a fracture event, the energy of fractures (e.g., low-energy such as fragility fractures and high-energy such as fractures from a motor vehicle accident) and the location of fractures for adults with ID and ASD.

Methods

In this retrospective cohort study from the United States, medical records from a single clinical site were abstracted to gather information on fracture characteristics (i.e., fracture location, energy of fracture and activities that lead to the fracture event) from adults ≥ 18 years old with intellectual disabilities (ID) and/or autism spectrum disorders (ASD) that sustained ≥ 1 fracture between 1 November 2012 and 2 November 2021. The fracture characteristics were described for the entire cohort and by the following subgroups: ID only, ASD only and ID + ASD.

Results

Of the 126 adults with ID and/or ASD, there were a total of 147 fractures for analysis: 84.9% had one fracture, 13.5% had two fractures and 1.6% had three fractures. For the entire cohort, 32.0% were defined as high-energy fractures, but this varied by subgroup: 24.1% for ID only (n = 69 participants, n = 87 fractures), 50.0% for ASD only (n = 35 participants, n = 36 fractures) and 33.3% for ID + ASD (n = 22 participants, n = 24 fractures). The remaining fractures were defined as low-energy or unknown energy. The most common activities that lead to a fracture event were broadly categorised as ‘low-impact falls, unwitnessed falls, transfers’ for ID only (47.1%), ASD only (27.8%) and ID + ASD (41.7%). The most common skeletal region of fractures occurred in the lower extremities for ID only (42.5%) and ID + ASD (50.0%) and in the upper extremities for ASD only (33.3%).

Conclusions

Despite the age being 18 years and older (i.e., not exclusively elderly), most fractures were considered to be low-energy and occurred in the extremities, but this varied by subgroup. This study identified the activities that led to a fracture event, which may inform fracture prevention efforts such as adjunct therapies.

背景：成人智力障碍（ID）和自闭症谱系障碍（ASD）有较高的骨折风险；然而，人们对裂缝的关键特征知之甚少，这些特征可能有助于预防裂缝的发生。目的是描述已报道的导致骨折事件的活动，骨折的能量（例如，低能骨折，如易碎性骨折和高能量骨折，如机动车事故造成的骨折）以及患有ID和ASD的成人骨折的位置。方法：在这项来自美国的回顾性队列研究中，从单个临床站点提取医疗记录，收集2012年11月1日至2021年11月2日期间发生≥1次骨折的智力残疾（ID）和/或自闭症谱系障碍(ASD)≥18岁成人的骨折特征信息（即骨折位置、骨折能量和导致骨折事件的活动）。整个队列的骨折特征被描述为以下亚组：仅ID、仅ASD和ID + ASD。结果：在126例成人ID和/或ASD中，共有147例骨折进行分析：84.9%为1例骨折，13.5%为2例骨折，1.6%为3例骨折。在整个队列中，32.0%被定义为高能骨折，但这一比例因亚组而异：仅ID为24.1% （n = 69名参与者，n = 87例骨折），仅ASD为50.0% （n = 35名参与者，n = 36例骨折），ID + ASD为33.3% （n = 22名参与者，n = 24例骨折）。剩余的骨折被定义为低能量或未知能量。最常见的导致骨折事件的活动大致分为“低冲击跌倒、未目击跌倒、转移”，仅为ID（47.1%）、仅为ASD（27.8%）和ID + ASD（41.7%）。最常见的骨折发生在下肢，仅为ID（42.5%）和ID + ASD(50.0%)，仅为ASD的上肢（33.3%）。结论：尽管年龄在18岁及以上（即不完全是老年人），大多数骨折被认为是低能性的，发生在四肢，但这在亚组中有所不同。该研究确定了导致骨折事件的活动，这可能为骨折预防工作（如辅助治疗）提供信息。
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引用次数: 0
Accelerometer Output and Oxygen Uptake in Adults With and Without Down Syndrome: METs vs. Percent VO2Reserve 有和没有唐氏综合症的成年人的加速度计输出和氧摄取：METs与VO2Reserve百分比。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-20 DOI: 10.1111/jir.13253
S. Agiovlasitis, B. K. Ballenger, P. Choi, M. Haider, Q. Du, R. W. Motl

Background

The estimation of physical activity (PA) and sedentary behaviour with accelerometers is typically based on the relationship between accelerometer output and metabolic equivalents (METs)—an index of PA intensity. But for adults with Down syndrome (DS), PA intensity may be better reflected in the percent oxygen uptake reserve (%VO2Reserve), as it accounts for their lower aerobic fitness. This study examined if the relationship between accelerometer output and METs or %VO2Reserve across various PAs and sedentary behaviours differs between adults with and without DS.

Methods

Forty-one adults with DS (age 35 ± 9 years; 18 women) and 41 adults without DS (age 24 ± 5 years; 18 women) performed 17 tasks of varying intensity. We estimated aerobic fitness with a submaximal treadmill test. We measured oxygen uptake with portable calorimetry and expressed it as METs and %VO2Reserve. Output from triaxial accelerometers on the nondominant hip and wrist was determined as Vector Magnitude (VM). We used multilevel modelling to evaluate the relationships of METs or %VO2Reserve with VM, controlling for body mass index (BMI) and age.

Results

For the hip accelerometer, VM and the group-by-VM interaction significantly predicted METs (p < 0.001; conditional R2 = 0.82), but between-group differences were small. For the wrist accelerometer, VM and age significantly predicted METs (p < 0.035; conditional R2 = 0.76). For both the hip and the wrist accelerometer, VM, the group-by-VM interaction and BMI significantly predicted %VO2Reserve (p ≤ 0.047; conditional R2 = 0.82 and 0.74, respectively). Between-group differences in the response to VM were larger for VO2Reserve than METs models.

Conclusion

The relationship between accelerometer output and %VO2Reserve across PAs and sedentary behaviours is different between adults with and without DS. Calibrating accelerometer output against %VO2Reserve may be preferable to METs.

背景：用加速度计估计身体活动（PA）和久坐行为通常是基于加速度计输出和代谢当量（METs）之间的关系——代谢当量是PA强度的一个指标。但对于患有唐氏综合症（DS）的成年人，PA强度可能更好地反映在氧气摄取储备百分比（%VO2Reserve）上，因为它解释了他们较低的有氧适应性。本研究考察了加速度计输出与不同PAs和久坐行为之间的METs或%VO2Reserve之间的关系是否在有和没有DS的成年人之间有所不同。方法：41例成人退行性椎体滑移(年龄35±9岁；女性18例)，无退行性痴呆的成人41例(年龄24±5岁；18名女性)完成了17项不同强度的任务。我们用亚极限跑步机测试来估计有氧适能。我们用便携式量热仪测量了摄氧量，并用METs和%VO2Reserve表示。非优势髋关节和腕部三轴加速度计的输出被确定为矢量大小（VM）。在控制体重指数（BMI）和年龄的情况下，我们使用多水平模型来评估METs或%VO2Reserve与VM的关系。结果：对于髋关节加速度计，VM和组间VM相互作用显著预测METs (p 2 = 0.82)，但组间差异较小。对于手腕加速度计，VM和年龄显著预测METs （p 2 = 0.76）。对于髋部和腕部加速度计，VM、组间VM交互作用和BMI显著预测%VO2Reserve (p≤0.047；条件R2分别为0.82和0.74)。VO2Reserve模型对VM反应的组间差异大于METs模型。结论：加速度计输出和%VO2Reserve与久坐行为之间的关系在有和没有DS的成年人中是不同的。根据%VO2Reserve校准加速度计输出可能比METs更可取。
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引用次数: 0
Judging Offenders With Intellectual Disabilities: Systematic Review of Criminal Justice System Professionals' Expressed Views and Attitudes Towards Offenders With Intellectual Disabilities 审判智障罪犯：系统回顾刑事司法系统专业人士对智障罪犯的看法和态度。
IF 2 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-19 DOI: 10.1111/jir.13252
Georgia Powell, Kate Blake-Holmes, Adela Petrache, Rebecca Turrell, Peter Beazley

Background

The diagnosis of an intellectual disability is suggested to have particularly stigmatising connotations, particularly within the criminal justice system (CJS). This paper aims to synthesise qualitative studies investigating the attitudes of CJS professionals to people with intellectual disabilities (PWID), specifically offenders with intellectual disabilities, and to appraise their methodological quality.

Methods

A systematic search was conducted using PsychINFO, Web of Science, MEDLINE, EMBASE, CINAHL Complete and EThOS databases. Articles were screened for inclusion by title, abstract and full text to ensure predefined inclusion criteria were met. Individual study quality was rated using the 10-item Critical Appraisal Skills Programme (CASP) checklist, with the addition of an eleventh item to capture included studies' theoretical underpinnings and optimise the value of the quality appraisal. Thematic synthesis was then used to explore and synthesise the findings of the included studies.

Results

Ten papers were included in the review, spanning 766 participants. Studies included utilised mixed methods surveys (n = 3), qualitative surveys (n = 1), semistructured interviews (n = 3), semistructured focus groups (n = 1), unstructured interviews (n = 1) and secondary analysis of previously collected research data (n = 1). Methodological quality was broadly of a high standard; however, all included papers failed to reflect on the relationship between the researchers and participants. Five themes were identified: conflating diagnoses, perceptions of PWID as offenders, procedural issues affecting PWID, development and maintenance of perceptions, and impact of training.

Conclusions

This review highlights pervasive negative perceptions of offenders with intellectual disabilities within CJS staff groups. Clinician- and system-level factors are considered in the development and maintenance of such attitudes and suggestions made for improving CJS staff perceptions and knowledge of offenders with intellectual disabilities.

背景：智力残疾的诊断被认为具有特别污名化的内涵，特别是在刑事司法系统（CJS）内。本文旨在综合质性研究，调查CJS专业人员对智障人士（特别是智障罪犯）的态度，并评估其方法学质量。方法：系统检索PsychINFO、Web of Science、MEDLINE、EMBASE、CINAHL Complete和EThOS数据库。文章通过标题、摘要和全文进行筛选，以确保符合预定义的纳入标准。使用10项关键评估技能计划（CASP）清单对个人研究质量进行评级，并增加了第11项，以捕获包括研究的理论基础并优化质量评估的价值。然后使用主题综合来探索和综合纳入研究的结果。结果：纳入10篇论文，766名受试者。研究包括使用混合方法调查（n = 3）、定性调查（n = 1）、半结构化访谈（n = 3）、半结构化焦点小组（n = 1）、非结构化访谈（n = 1）和对先前收集的研究数据的二次分析（n = 1）。方法质量大体上是高标准的；然而，所有纳入的论文都没有反映研究人员和参与者之间的关系。确定了五个主题：合并诊断，将PWID视为罪犯的看法，影响PWID的程序问题，看法的发展和维持以及培训的影响。结论：本综述突出了CJS工作人员群体中普遍存在的对智力障碍罪犯的负面看法。临床医生和系统层面的因素在发展和维持这种态度和建议，以提高CJS工作人员对智力残疾罪犯的认识和认识。
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引用次数: 0
Characterisation of Challenging Behaviours and Associated Genetic and Neurological Features in Cardiofaciocutaneous Syndrome 心皮肤综合征的挑战性行为特征及相关遗传和神经学特征。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-19 DOI: 10.1111/jir.13247
Dante J. Rogers, Rebekah L. Hudock, Adele F. Dimian, Josue Collazo-Lopez, Ryan Shanley, Elizabeth I. Pierpont

Background

Challenging behaviours such as self-injury and aggression are prevalent among individuals with intellectual disability (ID), significantly impacting quality of life. Cardiofaciocutaneous syndrome (CFCS), a rare multisystem genetic disorder caused by variants in the BRAF, MAP2K1, MAP2K2, or KRAS genes, commonly presents with ID and other neurobehavioural features. To inform effective clinical management, we aimed to characterise and quantify challenging and repetitive behaviours in CFCS, identify functions that may maintain the behaviours, and examine associations with genotype and neurological comorbidities.

Methods

In this cross-sectional cohort study, caregivers of 61 individuals with CFCS (mean age = 14.2 years; 61% female) completed an electronic survey to capture information regarding demographics, adaptive skills, and neurological history. Genotype was determined from molecular genetic testing results. The frequency, severity, topography, and function of challenging behaviours were assessed with behaviour questionnaires validated for children and adults with developmental disabilities. We evaluated trends using descriptive analyses and examined mean differences across age, genotype, and neurological variables.

Results

The cohort consisted primarily of individuals with BRAF variants (62%), followed by MAP2K1 (28%) and MAP2K2 (10%) variants. Prevalence of challenging behaviour was high (77%), and self-injurious and aggressive behaviours were most frequent and severe among adolescents with CFCS relative to younger children or adults. Escape (seeking to avoid an unwanted situation or task) was the most endorsed behavioural function to maintain self-injurious and aggressive/destructive behaviours. BRAF gene variants were associated with the most frequent and variable challenging behaviours, followed by MAP2K1, and then MAP2K2. Challenging and repetitive behaviours were most prevalent among individuals with moderate adaptive functioning, clinically significant sleep disturbance, higher levels of pain interference, and more substantial sensory modulation differences. Individuals with epilepsy also exhibited more frequent repetitive and self-injurious behaviours.

Conclusion

Caregivers reported a high prevalence of challenging behaviours among individuals with CFCS, especially in late childhood and adolescence. Therapeutic approach

背景：自我伤害和攻击等具有挑战性的行为在智力残疾（ID）个体中普遍存在，显著影响着生活质量。心皮肤综合征（CFCS）是一种罕见的多系统遗传疾病，由BRAF、MAP2K1、MAP2K2或KRAS基因变异引起，通常表现为ID和其他神经行为特征。为了告知有效的临床管理，我们旨在描述和量化CFCS的挑战性和重复性行为，确定可能维持这些行为的功能，并检查与基因型和神经合并症的关系。方法：在本横断面队列研究中，61例CFCS患者的护理人员(平均年龄= 14.2岁；（61%女性）完成了一项电子调查，以获取有关人口统计、适应技能和神经病史的信息。基因型由分子基因检测结果确定。使用针对发育障碍儿童和成人的行为问卷对挑战性行为的频率、严重程度、地形和功能进行评估。我们使用描述性分析来评估趋势，并检查了年龄、基因型和神经变量之间的平均差异。结果：该队列主要由BRAF变异个体（62%）组成，其次是MAP2K1（28%）和MAP2K2（10%）变异个体。挑战行为的患病率很高（77%），相对于年幼的儿童或成人，患有CFCS的青少年中自残和攻击行为最为频繁和严重。逃避（寻求避免不想要的情况或任务）是维持自我伤害和攻击/破坏性行为的最被认可的行为功能。BRAF基因变异与最常见和最多变的挑战行为相关，其次是MAP2K1，然后是MAP2K2。挑战性和重复性行为在具有中度适应性功能、临床显著睡眠障碍、疼痛干扰程度较高、感觉调节差异更大的个体中最为普遍。癫痫患者也表现出更频繁的重复性和自残行为。结论：照护者报告了CFCS患者中具有挑战性行为的高患病率，特别是在儿童期晚期和青春期。需要治疗方法来解决具有挑战性的行为，以最佳地支持CFCS患者及其照顾者。
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引用次数: 0
Cognitive and Behavioural Associations of Visual and Hearing Impairments Across the Lifespan in People With Down Syndrome, a Scoping Review 唐氏综合症患者一生中视觉和听觉障碍的认知和行为关联，一项范围审查。
IF 2 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-16 DOI: 10.1111/jir.13248
Nicolo J. Betoni, Cynthia M. Okamoto, Ira T. Lott, Christy L. Hom

Background

Hearing and visual impairments are common in individuals with Down syndrome (DS), yet it remains unclear whether sensory impairments are associated with cognitive and behavioural functioning such as language, memory and socialisation. This literature review examines those associations.

Methods

A scoping review of four databases was conducted to examine associations between sensory impairments and cognitive or behavioural outcomes in individuals with DS. Study evidence was assessed based on design, sample size, assessment modalities and statistical significance.

Results

Of 1471 studies screened, 38 met inclusion criteria. Hearing impairments were associated with delays in language and motor development during infancy, lower overall cognitive ability and social communication difficulties in childhood and reduced adaptive functioning and intellectual decline in adulthood. Visual impairments were linked to learning difficulties in childhood and to declines in adaptive behaviour, visual-motor integration and cognitive performance in adulthood. Subdomains of cognitive functioning such as memory, reasoning or processing speed were not reported for adults.

Conclusion

Uncorrected hearing and visual impairments in individuals with DS are associated with a range of cognitive and behavioural outcomes across the lifespan. The strongest associations were observed between hearing impairments and language delays in infancy and childhood, and between visual impairments and adaptive behaviour challenges in childhood and adulthood. Sensory impairments were associated with challenges in similar domains—particularly language, adaptive functioning and learning—across the lifespan. This suggests a potential continuity of these associations over time and that long-standing uncorrected impairments may be associated with reduced cognitive reserve and increased vulnerability to decline—highlighting the need for early identification and intervention.

背景：听力和视觉障碍在唐氏综合征（DS）患者中很常见，但感觉障碍是否与认知和行为功能（如语言、记忆和社交）相关尚不清楚。这篇文献综述探讨了这些关联。方法：对四个数据库进行了范围审查，以检查退行性椎体滑移患者的感觉障碍与认知或行为结果之间的关系。根据设计、样本量、评估方式和统计显著性对研究证据进行评估。结果：在筛选的1471项研究中，38项符合纳入标准。听力障碍与婴儿期语言和运动发育迟缓、儿童期整体认知能力下降和社会沟通困难、成年期适应功能下降和智力下降有关。视力障碍与儿童时期的学习困难有关，与成年后适应行为、视觉运动整合和认知表现的下降有关。认知功能的子领域，如记忆、推理或处理速度，在成人中没有报道。结论：退行性椎体滑移患者未矫正的听力和视力障碍与一生中一系列认知和行为结果相关。在婴儿期和儿童期，听力障碍和语言障碍之间存在最强的关联，在儿童期和成年期，视力障碍和适应行为挑战之间存在最强的关联。感觉障碍与一生中类似领域的挑战有关，尤其是语言、适应功能和学习。这表明，随着时间的推移，这些关联可能具有连续性，长期未纠正的损伤可能与认知储备减少和对衰退的脆弱性增加有关，这突出了早期识别和干预的必要性。
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引用次数: 0
The Factor Structure of the Self-Determination Inventory Portuguese Translation for Persons With and Without Intellectual and Developmental Disabilities: A Confirmatory Analysis 智障人士与非智障人士自决权量表葡萄牙语翻译的因素结构：验证性分析。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-16 DOI: 10.1111/jir.13249
Clarissa Moreira, Celeste Simões, André Oliveira, Armanda Pereira, Pedro Rosário, Mayumi Hagiwara, Karrie A. Shogren, Sofia Santos

Background

Self-determination has seen increasing interest in literature worldwide, in terms of its contextualisation, operationalisation and assessment. Developing sound and robust instruments will enable valid assessment both within individual countries and in cross-cultural comparisons.

Methods

The new Self-Determination Inventory (SDI) was translated and adapted into Portuguese, for people with intellectual and developmental disabilities (IDD) and our goal was to analyse the SDI Portuguese Translation's factorial structure. The inventory was administered to 408 participants, between 13 and 73 years old (27 ± 13.6), 246 females and 162 males, with (n = 146) and without IDD (n = 262). Factor structure, measurement invariance and latent difference between persons with and without IDD were analysed.

Results

The confirmatory factor analysis supported the SDI Portuguese Translations' psychometric properties. The data fit a unidimensional model, indicating that the 21 items represent the construct better than a three-factor model. The measurement invariance across groups confirms that the latent construct can be measured and the assessment used with both groups. However, participants with IDD experience greater variability in scores and tend to report lower levels of self-determination.

Conclusions

Findings provide support for the use of SDI Portuguese Translation for persons with and without IDD. Implications for research and practice are discussed.

背景：自决在世界范围内的文学中越来越受到关注，包括语境化、操作化和评估。发展健全和有力的工具将使在个别国家内部和跨文化比较中进行有效评估成为可能。方法：将新的自我决定量表（SDI）翻译成葡萄牙语，用于智力和发育障碍（IDD）的人群，我们的目标是分析SDI葡萄牙语译本的析因结构。调查对象408人，年龄13 ~ 73岁（27±13.6），女性246人，男性162人，有IDD （n = 146）和无IDD （n = 262）。分析了缺乏症患者和非缺乏症患者的因素结构、测量不变性和潜在差异。结果：验证性因子分析支持SDI葡萄牙语翻译的心理测量特征。数据拟合一维模型，表明21个项目比三因素模型更能代表结构。各组间的测量不变性证实了潜在构念可以被测量，并且两组都可以使用评估。然而，患有缺乏症的参与者在得分上的差异更大，并且倾向于报告较低的自我决定水平。结论：研究结果为患有和不患有IDD的人使用SDI葡萄牙语翻译提供了支持。讨论了对研究和实践的启示。
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引用次数: 0
A Further Characterisation of the Neuropsychological Profile, Social Perception, and Academic Skills in Sotos Syndrome 索托斯综合症的神经心理特征、社会感知和学术技能的进一步表征。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-15 DOI: 10.1111/jir.13250
Niccolò Butti, Cosimo Urgesi, Alice Decio, Lidia Pezzani, Donatella Milani, Rosario Montirosso

Background

Sotos syndrome (SoS) is a rare genetic disorder characterised by physical overgrowth and by frequent intellectual disability and comorbidity with neurodevelopmental disorders. A recent study documented a specific cognitive profile of SoS. However, further research is needed to replicate and expand these findings to other neuropsychological domains, including social perception. Moreover, numeracy has long been considered as a weakness in SoS, but inconsistent evidence asks for a further assessment of academic skills.

Method

This single-cohort, cross-sectional study enrolled 28 participants with SoS aged 5–18 years, who underwent a comprehensive neuropsychological assessment. Moreover, a school-age subgroup was administered with standardised tests assessing academic skills.

Results

The neuropsychological profile was characterised by lowest scores in both language and visuospatial abilities and highest scores in memory for faces. Greatest difficulties were observed in rapid verbal production, visuospatial memory and graphomotor control. Neither attention and executive functions nor social perception skills were relative weaknesses or strengths of the profile. An exploratory analysis revealed that the comorbidity with autism spectrum disorder and/or attention-deficit/hyperactivity disorder did not result in a different neuropsychological profile. A large part of the sample had poor mathematics skills, and only one participant did not display any difficulties in mathematics.

Conclusions

This study extends the previous characterisation of the SoS cognitive profile and documents a prevalent difficulty in mathematics skills. Notably, social perception does not emerge as selectively impaired in SoS. The results have important implications for tailoring rehabilitative interventions, school adjustment and daily living of children and adolescents with SoS.

背景：索托斯综合征（Sotos syndrome, SoS）是一种罕见的遗传性疾病，其特征是身体过度生长，经常伴有智力障碍和神经发育障碍的合并症。最近的一项研究记录了SoS的特定认知特征。然而，需要进一步的研究来复制和扩展这些发现到其他神经心理学领域，包括社会感知。此外，长期以来，计算能力一直被认为是SoS的弱点，但不一致的证据要求对学术技能进行进一步评估。方法：这项单队列横断面研究招募了28名年龄在5-18岁的SoS患者，他们接受了全面的神经心理学评估。此外，对一个学龄小组进行了评估学术技能的标准化测试。结果：神经心理特征表现为语言和视觉空间能力得分最低，面部记忆得分最高。在快速语言表达、视觉空间记忆和书写运动控制方面观察到最大的困难。无论是注意力和执行功能，还是社会感知技能，都不是相对的弱点或优势。一项探索性分析显示，与自闭症谱系障碍和/或注意力缺陷/多动障碍共病并没有导致不同的神经心理学特征。大部分样本的数学能力很差，只有一个参与者在数学上没有表现出任何困难。结论：本研究扩展了先前对SoS认知特征的描述，并记录了普遍存在的数学技能困难。值得注意的是，社会知觉在SoS中并没有选择性受损。研究结果对有SoS的儿童和青少年的康复干预、学校适应和日常生活具有重要意义。
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引用次数: 0
Comparing Emotional Development in Persons With Intellectual Disability With and Without Autism Spectrum Disorder 比较有和没有自闭症谱系障碍的智力残疾者的情感发展。
IF 2 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-05-14 DOI: 10.1111/jir.13251
Hauke Hermann, Annemieke M. Witte, Anna Pöhlmann, Paula S. Sterkenburg, Tanja Sappok

Background

Intellectual disability (ID) often co-occurs with autism spectrum disorder (ASD). To better understand the needs of persons with ID/ASD, level of emotional development (ED) can be determined with the Scale of Emotional Development-Short (SED-S). This preregistered study examined differences in ED by comparing total, domain, and item scores between people with ID/ASD and people with ID.

Methods

One hundred seventy-four participants with ID/ASD were matched to 174 participants with ID only. Informants reported on the SED-S, which includes 200 yes-no items grouped into eight domains, with each domain including five stages of ED.

Results

The ID/ASD group showed lower total scores (M = 2.19, SD = 0.97) compared with the ID group (M = 2.86, SD = 1.11). They also showed lower scores in all eight domains. When groups were compared based on total scores, people with ID/ASD in SED-S 2 scored lower in the domain Affect, while those in SED-S 3 scored lower in the domains Affect, Communication, and Peers compared with people with ID in the same stage. People with ID/ASD in SED-S 4 scored higher in the domain Peers compared with people with ID in the same stage. There was an uneven distribution of ‘yes’ responses, significant differences in ‘yes’ responses to 27 items, and a lower mean frequency of ‘yes’ responses from people with ID/ASD.

Conclusions

Although this study was largely exploratory and warrants replication, results provide an important next step towards a better understanding of the emotional needs and behaviours of people with ID/ASD.

背景：智力障碍（ID）常与自闭症谱系障碍（ASD）共存。为了更好地了解ID/ASD患者的需求，情感发展水平（ED）可以用情感发展量表（SED-S）来确定。这项预先注册的研究通过比较ID/ASD患者和ID患者的总分、领域和项目得分来检查ED的差异。方法：174名ID/ASD参与者与174名ID/ASD参与者进行配对。结果：ID/ASD组的总分（M = 2.19, SD = 0.97）低于ID组（M = 2.86, SD = 1.11）。他们在所有八个领域的得分也较低。当根据总分对各组进行比较时，SED-S - 2中ID/ASD患者在情感领域得分较低，而SED-S - 3中ID/ASD患者在情感、沟通和同伴领域得分较低。在SED-S - 4中，ID/ASD患者在同侪领域的得分高于ID患者。回答“是”的分布不均匀，对27个问题的回答存在显著差异，ID/ASD患者回答“是”的平均频率较低。结论：尽管这项研究在很大程度上是探索性的，值得重复，但结果为更好地理解ID/ASD患者的情感需求和行为提供了重要的下一步。
{"title":"Comparing Emotional Development in Persons With Intellectual Disability With and Without Autism Spectrum Disorder","authors":"Hauke Hermann,&nbsp;Annemieke M. Witte,&nbsp;Anna Pöhlmann,&nbsp;Paula S. Sterkenburg,&nbsp;Tanja Sappok","doi":"10.1111/jir.13251","DOIUrl":"10.1111/jir.13251","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Intellectual disability (ID) often co-occurs with autism spectrum disorder (ASD). To better understand the needs of persons with ID/ASD, level of emotional development (ED) can be determined with the Scale of Emotional Development-Short (SED-S). This preregistered study examined differences in ED by comparing total, domain, and item scores between people with ID/ASD and people with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>One hundred seventy-four participants with ID/ASD were matched to 174 participants with ID only. Informants reported on the SED-S, which includes 200 yes-no items grouped into eight domains, with each domain including five stages of ED.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The ID/ASD group showed lower total scores (<i>M</i> = 2.19, <i>SD</i> = 0.97) compared with the ID group (<i>M</i> = 2.86, <i>SD</i> = 1.11). They also showed lower scores in all eight domains. When groups were compared based on total scores, people with ID/ASD in SED-S 2 scored lower in the domain <i>Affect</i>, while those in SED-S 3 scored lower in the domains <i>Affect</i>, <i>Communication</i>, and <i>Peers</i> compared with people with ID in the same stage. People with ID/ASD in SED-S 4 scored higher in the domain <i>Peers</i> compared with people with ID in the same stage. There was an uneven distribution of ‘yes’ responses, significant differences in ‘yes’ responses to 27 items, and a lower mean frequency of ‘yes’ responses from people with ID/ASD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Although this study was largely exploratory and warrants replication, results provide an important next step towards a better understanding of the emotional needs and behaviours of people with ID/ASD.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1143-1153"},"PeriodicalIF":2.0,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13251","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143988595","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
Evaluating Disparities in the Utilisation of Therapy Services for Children With Down Syndrome Through a Deidentified Medicaid Data Set 通过确定的医疗补助数据集评估唐氏综合症儿童治疗服务利用的差异。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-04-30 DOI: 10.1111/jir.13246
Ashlyn J. McKeehan, Cristina R. Smith, Christina Y. Pelatti, Roxanna Bendixen, Sara Knox

Background

The objective of this retrospective observational study was to examine disparities in health care utilisation for children with Down syndrome (DS).

Methods

Outpatient Medicaid claims from 2016 to 2018 were used to examine the utilisation of therapy services and annual Medicaid payments for children with DS based on sex, race and age. Multilevel logistic regression was used to analyse the relationship of therapy utilisation with sex, race and age. Gamma-distributed log link model was used to analyse the relationship between annual Medicaid payments and race.

Results

The cohort consisted of 17 813 children with DS aged 21 and under. There was no significant difference in utilisation of therapy services between sexes. The likelihood of receiving therapy services decreased for Black or other race individuals compared to White. White individuals had higher annual Medicaid payments than Black or other race individuals. The likelihood of receiving therapy services increased for children 3–17 years old when compared to children aged 0–2 years old.

Discussion

There are significant disparities in therapy utilisation for children with DS related to race and age. Increased annual Medicaid payments for White individuals may indicate that they are receiving more outpatient services than the Black/other populations. Decreased therapy utilisation for ages 18–21 years corresponds with the transition to adulthood. The decreased likelihood of receiving therapy services for ages 0–2 is concerning due to the importance of early intervention. Further research is needed to evaluate factors contributing to disparities in outpatient utilisation for children with DS.

背景：本回顾性观察性研究的目的是研究唐氏综合症（DS）儿童在医疗保健利用方面的差异。方法：使用2016年至2018年的门诊医疗补助申请，以性别、种族和年龄为基础，检查治疗服务的利用情况和DS儿童的年度医疗补助支付情况。采用多水平logistic回归分析治疗使用与性别、种族和年龄的关系。使用伽马分布日志链接模型分析年度医疗补助支付与种族之间的关系。结果：该队列包括17 813名年龄在21岁及以下的DS患儿。在治疗服务的利用方面，男女之间没有显著差异。与白人相比，黑人或其他种族个体接受治疗服务的可能性降低。白人每年的医疗补助支出高于黑人或其他种族的人。与0-2岁儿童相比，3-17岁儿童接受治疗服务的可能性增加。讨论：与种族和年龄相关的退行性椎体滑移儿童的治疗应用存在显著差异。白人每年增加的医疗补助支付可能表明他们比黑人/其他人群接受更多的门诊服务。18-21岁的治疗使用率下降与成年过渡相对应。由于早期干预的重要性，0-2岁儿童接受治疗服务的可能性下降令人担忧。需要进一步的研究来评估导致退行性椎体滑移儿童门诊使用率差异的因素。
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引用次数: 0
Prevalence and Course of Anxiety and Depressive Symptoms in Adolescents With a Mild to Borderline Intellectual Disability, Inside and Outside Residential Treatment 轻度至边缘性智力障碍青少年住院治疗内外焦虑抑郁症状的患病率及病程
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Journal of Intellectual Disability Research
Pub Date : 2025-04-27 DOI: 10.1111/jir.13242
Johanna J. Westera, Mariët J. van der Molen, Carlo Schuengel

Background

This study compared anxiety and depressive problems in adolescents with a mild to borderline intellectual disability in a residential treatment facility (MBID-RT) to those in the general community (MBID-GC).

Method

Participants (N = 923, aged 11.9–19.3 years, M = 14.6 years, SD = 1.51, 42% girls) completed measures on anxiety and depressive problems. Part of this group (n = 155) participated twice, roughly 1 year apart.

Results

Adolescents in the MBID-RT subgroup reported statistically more anxiety and depressive problems (higher average scores, higher percentages above cut-off scores and higher percentage of comorbid anxiety and depressive symptoms). Over a 1-year period, anxiety and depressive symptoms decreased in the MBID-GC subgroup but not in the MBID-RT subgroup.

Conclusions

Findings call attention to the high prevalence of anxiety and depressive symptoms in adolescents with MBID in general, and those in residential treatment in particular, especially when externalising problems may be on the foreground.

背景：本研究比较了居住治疗机构（MBID-RT）和普通社区（MBID-GC）中轻度至边缘性智力残疾青少年的焦虑和抑郁问题。方法：参与者（N = 923，年龄11.9 ~ 19.3岁，M = 14.6岁，SD = 1.51, 42%为女孩）完成焦虑和抑郁问题的测量。该组的一部分（n = 155）参加了两次，大约间隔1年。结果：MBID-RT亚组的青少年报告了统计学上更多的焦虑和抑郁问题（更高的平均得分，高于临界值的百分比和更高的共病焦虑和抑郁症状百分比）。在1年的时间里，MBID-GC亚组的焦虑和抑郁症状有所减轻，而MBID-RT亚组则没有。结论：研究结果引起了人们对MBID青少年焦虑和抑郁症状普遍存在的关注，特别是那些接受住院治疗的青少年，特别是当外化问题可能出现在前景中时。
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