Journal of Intellectual Disability Research最新文献_第9页

What explains regional variation in privately provided out-of-area residential placement costs for people with intellectual disability in Ireland? 爱尔兰智障人士在地区外私人提供的寄宿安置费用存在地区差异的原因是什么？

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-03-06 DOI: 10.1111/jir.13129

J. Cullinan, T. O'Brien, E. Yacoub

Background

Expenditure on residential placements for people with intellectual disability (ID) in Ireland is considerable and expected to increase. Despite this, there is limited evidence on the factors driving variation in privately provided ‘out-of-area’ residential placement costs, including across Community Health Organisations (CHOs)/regions. This is important to help inform the delivery of services at best value.

Methods

We analyse unit cost data from 2019 for a sample of 278 high-cost publicly funded privately provided out-of-area residential placements for people with ID in Ireland. We undertake univariate analysis of the relationship between costs and a wide range of variables using t-tests and one-way analysis of variance. We employ multivariable regression analysis to examine how raw differentials in unit costs across regions can be accounted for by individual-level characteristics.

Results

We estimate average unit costs of €264 170 per annum in our sample. The univariate analysis shows considerable variation in costs across a range of personal, disability, psychiatry/psychological, forensic issues, behaviour and supports and plans related variables. We also find wide variation in average unit costs across CHOs/regions (F = 4.58, P < 0.001), ranging from €213 380 to €331 880. The multivariable analysis shows that regional differences remain even after accounting for a wide range of individual characteristics that influence costs.

Conclusions

Our analysis shows that while the majority of differences in costs across regions can be explained, there is potential for cost savings in the provision of high-cost publicly funded out-of-area residential placements in Ireland. Overall this can help to develop and implement a more sustainable disability residential funding model in a context of rising demand for services. It also has potential implications for the approach to procurement of services.

背景：在爱尔兰，智障人士的住宿安置费用相当可观，而且预计还会增加。尽管如此，有关私人提供的 "地区外 "住宿安置费用差异的因素（包括社区医疗机构（CHO）/地区之间的差异）的证据却很有限。这对于以最佳价值提供服务非常重要：我们分析了2019年爱尔兰278个高成本公共资助私人提供的地区外智障人士寄宿安置样本的单位成本数据。我们使用 t 检验和单向方差分析对成本与各种变量之间的关系进行了单变量分析。我们采用多变量回归分析，研究不同地区单位成本的原始差异如何通过个人层面的特征来解释：我们估计样本的平均单位成本为每年 264 170 欧元。单变量分析表明，在一系列与个人、残疾、精神病学/心理学、法医问题、行为和支持以及计划相关的变量中，成本差异相当大。我们还发现，不同护理组织/地区的平均单位成本差异很大（F = 4.58，P 结论）：我们的分析表明，虽然不同地区之间的大部分成本差异都可以解释，但在爱尔兰，提供高成本的公共资助地区外寄宿安置仍有可能节约成本。总体而言，这有助于在服务需求不断增长的背景下，制定并实施更具可持续性的残疾人寄宿资助模式。它还可能对服务采购方法产生影响。

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引用次数: 0

Translation and validation of prolonged grief disorder (PG-13) scale in Urdu among bereaved adolescents with intellectual disability 在失去亲人的智障青少年中翻译并验证乌尔都语的长期悲伤障碍（PG-13）量表。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-03-06 DOI: 10.1111/jir.13131

N.-u.-a. Haider, N. I. Zaman

Background

The study aimed to translate and validate the Prolonged Grief Disorder (PG-13) scale from English into Urdu language. This involved examining its psychometric properties, evaluating its factor structure and assessing both convergent and discriminant validity. The study was conducted within the cultural context of Pakistan and focused on the assessment of manifestations of grief, including symptoms of prolonged grief, in adolescents with mild-to-moderate intellectual disability (ID). The PG-13 scale was selected for this study due to its demonstrated accuracy in measuring prolonged grieving symptoms in bereaved population.

Method

A total of 140 adolescents, aged 10–19 years according to the World Health Organization (WHO) 2018 criteria, were selected from 14 cities in Pakistan. These participants had lost loved ones within the time span of the last 4 years. The WHO (2018) guidelines for translation, adaptation, and validation were followed.

Results

The findings suggest that the translated and validated PG-13 scale has adequate psychometric properties, with Cronbach alpha coefficient of .97. Confirmatory factor analysis supports a single-factor structure for the scale, with factor loadings ranging from .80 to .95.

Conclusion

The PG-13 Urdu version is a reliable and validated scale available for assessing grieving symptoms in the Pakistani context.

研究背景本研究旨在将长期悲伤障碍（PG-13）量表从英语翻译成乌尔都语并对其进行验证。这包括检查其心理测量特性、评估其因子结构以及评估收敛效度和判别效度。这项研究是在巴基斯坦的文化背景下进行的，重点是评估轻度至中度智障（ID）青少年的悲伤表现，包括长期悲伤的症状。本研究选择了 PG-13 量表，因为该量表在测量丧亲人群的长期悲伤症状方面被证明是准确的：根据世界卫生组织（WHO）2018 年的标准，从巴基斯坦的 14 个城市中选取了 140 名年龄在 10-19 岁之间的青少年。这些参与者在过去 4 年中失去了亲人。研究遵循了世界卫生组织（2018 年）的翻译、改编和验证指南：研究结果表明，经过翻译和验证的 PG-13 量表具有充分的心理测量特性，其 Cronbach alpha 系数为 0.97。确认性因子分析支持量表的单因子结构，因子载荷在 0.80 至 0.95 之间：结论：PG-13 乌尔都语版是一个可靠且经过验证的量表，可用于评估巴基斯坦的悲伤症状。

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引用次数: 0

Lifestyle modification interventions for adults with intellectual disabilities: systematic review and meta-analysis at intervention and component levels 针对智障成人的生活方式调整干预：干预和组成部分层面的系统回顾和荟萃分析。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-27 DOI: 10.1111/jir.13098

D. Rana, S. Westrop, N. Jaiswal, E. Germeni, A. McGarty, L. Ells, P. Lally, M. McEwan, C. Melville, L. Harris, O. Wu

<div> <section> <h3> Background</h3> <p>Adults with intellectual disabilities (IDs) are susceptible to multiple health risk behaviours such as alcohol consumption, smoking, low physical activity, sedentary behaviour and poor diet. Lifestyle modification interventions can prevent or reduce negative health consequences caused by these behaviours. We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs.</p> </section> <section> <h3> Methods</h3> <p>A systematic review and meta-analysis were conducted. Electronic databases, clinical trial registries, grey literature and citations of systematic reviews and included studies were searched in January 2021 (updated February 2022). Randomised controlled trials and non-randomised controlled trials targeting alcohol consumption, smoking, low physical activity, sedentary behaviours and poor diet in adults (aged ≥ 18 years) with ID were included. Meta-analysis was conducted at the intervention level (pairwise and network meta-analysis) and the component-level (component network meta-analysis). Studies were coded using Michie's 19-item theory coding scheme and 94-item behaviour change taxonomies. Risk of bias was assessed using the Cochrane Risk of Bias (ROB) Version 2 and Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I). The study involved a patient and public involvement (PPI) group, including people with lived experience, who contributed extensively by shaping the methodology, providing valuable insights in interpreting results and organising of dissemination events.</p> </section> <section> <h3> Results</h3> <p>Our literature search identified 12 180 articles, of which 80 studies with 4805 participants were included in the review. The complexity of lifestyle modification intervention was dismantled by identifying six core components that influenced outcomes. Interventions targeting single or multiple health risk behaviours could have a single or combination of multiple core-components. Interventions (2 RCTS; 4 non-RCTs; 228 participants) targeting alcohol consumption and smoking behaviour were effective but based on limited evidence. Similarly, interventions targeting low physical activity only (16 RCTs; 17 non-RCTs; 1413 participants) or multiple behaviours (low physical activity only, sedentary behaviours and poor diet) (17 RCTs; 24 non-RCTs; 3164 participants) yielded mixed effectiveness in outcomes. Most interventions targeting low physical activity only or multiple behaviours generated positive effects on various outcomes while some interventions led to no change or worsened outcomes, which

背景：智障成人容易出现多种健康风险行为，如饮酒、吸烟、运动量少、久坐不动和饮食不当。改变生活方式的干预措施可以预防或减少这些行为对健康造成的负面影响。我们旨在确定针对智障成人健康风险行为的生活方式改变干预措施及其组成部分的有效性：方法：我们进行了系统回顾和荟萃分析。检索了 2021 年 1 月（2022 年 2 月更新）的电子数据库、临床试验登记簿、灰色文献以及系统综述和纳入研究的引文。纳入了针对智障成人（年龄≥ 18 岁）饮酒、吸烟、体力活动少、久坐不动行为和不良饮食习惯的随机对照试验和非随机对照试验。在干预水平（配对分析和网络荟萃分析）和成分水平（成分网络荟萃分析）上进行了荟萃分析。研究采用 Michie 的 19 项理论编码方案和 94 项行为改变分类标准进行编码。偏倚风险采用 Cochrane 第 2 版偏倚风险（ROB）和非随机干预研究偏倚风险（ROBINS-I）进行评估。患者和公众参与（PPI）小组也参与了这项研究，其中包括有亲身经历的人，他们通过制定研究方法做出了广泛贡献，在解释研究结果和组织传播活动方面提供了宝贵的见解：我们的文献检索发现了 12 180 篇文章，其中 80 项研究、4805 名参与者被纳入审查范围。通过确定影响结果的六个核心要素，我们分解了改变生活方式干预的复杂性。针对单个或多个健康风险行为的干预措施可以有一个或多个核心组成部分的组合。针对饮酒和吸烟行为的干预措施（2 项 RCTS；4 项非 RCTs；228 名参与者）是有效的，但依据的证据有限。同样，只针对低体力活动（16 项研究性对照试验；17 项非研究性对照试验；1413 名参与者）或多种行为（只针对低体力活动、久坐行为和不良饮食）（17 项研究性对照试验；24 项非研究性对照试验；3164 名参与者）的干预措施在结果上的有效性参差不齐。大多数只针对低体力活动或多种行为的干预措施对各种结果产生了积极影响，而一些干预措施则导致结果无变化或恶化，这可能是由于干预措施中存在单一核心成分或类似核心成分的组合。对体重管理结果进行的干预层面荟萃分析表明，与 "常规治疗 "和其他干预措施相比，没有一项干预措施能使结果发生统计学意义上的显著变化。以能量不足饮食、有氧运动和行为改变技术组合为核心成分的干预措施显示体重减轻幅度最大[平均差（MD）=-3.61，95%可信区间（CrI）-9.68 至 1.95]，而以饮食建议和有氧运动组合为核心成分的干预措施显示体重增加（MD 0.94，95%可信区间-3.93 至 4.91）。成分网络荟萃分析也发现了类似的结果，并确定了更多的成分。大多数研究存在高度和中度偏倚风险。在制定和调整干预措施时，使用了各种理论和行为改变技术：我们的系统综述首次全面探讨了针对智障成人的一系列单一和多重健康风险行为的生活方式改变干预措施，并与有生活经验的人共同制定了干预措施。它对未来的研究具有实际意义，因为它强调了混合方法研究在理解生活方式调整干预措施方面的重要性，以及在该领域针对特定人群进行改进的必要性（例如，定制干预措施、开发评估工具或手段、使用严格的研究方法和全面的报告框架）。相关知识的广泛传播以及包括有生活经验者在内的 PPI 群体的参与，将有助于未来的研究人员在设计干预措施时考虑到智障人士的独特需求、愿望和能力。

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引用次数: 0

Active Support Measure: a multilevel exploratory factor analysis 积极支持度量：多层次探索性因素分析。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-27 DOI: 10.1111/jir.13126

L. Humphreys, C. Bigby, T. Araten-Bergman, T. Iacono

Background

Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.

Methods

Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services.

Results

Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person.

Conclusions

The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.

背景：积极支持是一种以人为本的做法，可使智障人士参与有意义的活动和社会交往。积极支持测量法（ASM）是一种观察工具，旨在测量居住在辅助住宿服务机构的智障人士从工作人员那里获得的支持质量。本研究的目的是探索 ASM 的基本结构：对在澳大利亚住宿服务积极支持纵向研究中收集的 ASM 数据（236 家住宿服务机构的 884 名智障人士）进行了多层次探索性因素分析：多层次探索性因素分析表明，ASM 的 15 个项目中有 12 个加载在两个因素上，分别名为 "支持参与活动 "和 "与个人互动"：由 12 个项目组成的 ASM 可从两个方面衡量员工支持的质量。技术和人际交往技能构成了良好的积极支持。

{"title":"Active Support Measure: a multilevel exploratory factor analysis","authors":"L. Humphreys, C. Bigby, T. Araten-Bergman, T. Iacono","doi":"10.1111/jir.13126","DOIUrl":"10.1111/jir.13126","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Multilevel exploratory factor analysis was conducted on ASM data (<i>n</i> = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 6","pages":"564-572"},"PeriodicalIF":3.6,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13126","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139983066","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

A systematic review and meta-analysis of serum lipid concentrations in people with Down syndrome 唐氏综合征患者血清脂质浓度的系统回顾和荟萃分析

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-25 DOI: 10.1111/jir.13128

Carolina Gastelum Guerrero, Yuridia Lizet Cháidez Fernández, Dalia Magaña Ordorica, Heidi Berger, Marilyn Vazquez Landrove, Alma Guadrón Llanos, Carla Angulo Rojo, Javier Magaña Gómez

Background

Down syndrome (DS) is the most prevalent chromosomal disorder, being the leading cause of intellectual disability. The increased life expectancy of individuals with DS has led to a shift in the incidence of non-communicable chronic diseases, resulting in new concerns, particularly cardiovascular disease (CVD) and Alzheimer's disease. This study aimed to analyse the blood lipid profile of a large DS cohort to establish a baseline for evaluating health risk parameters.

Methods

A comprehensive literature search was conducted on PubMed and Virtual Health Library databases to identify original articles published before July 2022. Selected studies were included in the meta-analysis.

Results

Fifteen studies reporting serum lipid levels in individuals with DS were incorporated into the analysis. The meta-analysis used the means and standard deviations extracted from the selected studies. The analysis encompassed 671 participants in the DS group and 898 euploid controls. The results indicated significant differences in total cholesterol [C] (mean difference [MD]: −3.34; CI: 95%: −4.94 to −1.73; P < 0.0001), HDL-C (MD: −3.39; CI: 95%: −6.72 to −0.06; P = 0.05) and triglycerides (MD: 21.48; CI: 95%: 9.32 to 33.65; P = 0.0005) levels between individuals with DS and their control counterparts.

Conclusions

Individuals with DS have less favourable blood lipid concentrations than their controls, particularly HDL-C, triglycerides, and total-C, even when grouped by age. These findings underscore the importance of closer monitoring of lipid profiles in people with DS and the necessity for specific cut-offs for this population, considering the risk for ischemic heart and Alzheimer's diseases.

唐氏综合征（DS）是最常见的染色体疾病，也是导致智力残疾的主要原因。唐氏综合征患者预期寿命的延长导致了非传染性慢性疾病发病率的变化，引发了新的担忧，尤其是心血管疾病（CVD）和阿尔茨海默病。本研究旨在分析大量 DS 群体的血脂状况，为评估健康风险参数建立基线。

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引用次数: 0

Supporting active engagement of adults with intellectual disabilities in lifestyle modification interventions: a realist evidence synthesis of what works, for whom, in what context and why 支持智障成人积极参与改变生活方式的干预措施：关于哪些措施有效、对谁有效、在什么情况下有效以及为什么有效的现实主义证据综述。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-21 DOI: 10.1111/jir.13120

S. C. Westrop, D. Rana, N. Jaiswal, O. Wu, A. M. McGarty, C. Melville, L. Ells, P. Lally, M. McEwan, L. Harris, E. Germeni

Background

Lifestyle modification interventions for adults with intellectual disabilities have had, to date, mixed effectiveness. This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances.

Methods

A realist evidence synthesis was conducted that incorporated input from adults with intellectual disabilities and expert researchers. Following the development of an initial programme theory based on key literature and input from people with lived experience and academics working in this field, five major databases (MEDLINE, EMBASE, CINAHL, PsycINFO and ASSIA) and clinical trial repositories were systematically searched. Data from 79 studies were synthesised to develop context, mechanism and outcome configurations (CMOCs).

Results

The contexts and mechanisms identified related to the ability of adults with intellectual disabilities to actively take part in the intervention, which in turn contributes to what works, for whom and in what circumstances. The included CMOCs related to support involvement, negotiating the balance between autonomy and behaviour change, fostering social connectedness and fun, accessibility and suitability of intervention strategies and delivery and broader behavioural pathways to lifestyle change. It is also essential to work with people with lived experiences when developing and evaluating interventions.

Conclusions

Future lifestyle interventions research should be participatory in nature, and accessible data collection methods should also be explored as a way of including people with severe and profound intellectual disabilities in research. More emphasis should be given to the broader benefits of lifestyle change, such as opportunities for social interaction and connectedness.

背景：迄今为止，针对智障成人的生活方式调整干预措施效果参差不齐。本研究旨在了解针对智障成人的生活方式调整干预措施是如何起作用的，对谁起作用以及在什么情况下起作用：方法：进行了一项现实主义证据综合，其中包括智障成人和专家研究人员的意见。在根据主要文献以及有生活经验者和该领域学者的意见发展出初步方案理论后，对五个主要数据库（MEDLINE、EMBASE、CINAHL、PsycINFO 和 ASSIA）和临床试验库进行了系统检索。对来自 79 项研究的数据进行了综合，以制定背景、机制和结果配置（CMOCs）：结果：所确定的背景和机制与智障成人积极参与干预的能力有关，这反过来又有助于确定在什么情况下对什么人起作用。所包含的CMOCs涉及支持参与、协商自主与行为改变之间的平衡、促进社会联系和乐趣、干预策略和实施的可及性和适宜性，以及改变生活方式的更广泛的行为途径。在制定和评估干预措施时，还必须与有生活经验的人合作：结论：未来的生活方式干预研究应具有参与性，还应探索无障碍数据收集方法，作为将重度和极重度智障人士纳入研究的一种方式。应更加重视改变生活方式所带来的更广泛的益处，如社交互动和联系的机会。

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引用次数: 0

Hospitalisation and mortality among privately insured individuals with COVID-19 in the United States: The role of intellectual disabilities and Neurogenetic disorders 美国私人投保的 COVID-19 患者的住院率和死亡率：智力残疾和神经遗传疾病的作用。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-19 DOI: 10.1111/jir.13116

A. Davis, N. Copeland-Linder, K. Phuong, H. Belcher, K. van Eck

<div> <section> <h3> Background</h3> <p>Individuals with intellectual disabilities (IDs) and neurogenetic conditions (IDNDs) are at greater risk for comorbidities that may increase adverse outcomes for this population when they have coronavirus disease 2019 (COVID-19). The study aims are to examine the population-level odds of hospitalisation and mortality of privately insured individuals with COVID-19 with and without IDNDs IDs, controlling for sociodemographics and comorbid health conditions.</p> </section> <section> <h3> Methods</h3> <p>This is a retrospective, cross-sectional study of 1174 individuals with IDs and neurogenetic conditions within a population of 752 237 de-identified, privately insured, US patients diagnosed with COVID-19 between February 2020 and September 2020. Odds of hospitalisation and mortality among COVID-19 patients with IDNDs adjusted for demographic characteristics, Health Resources and Services Administration region, states with Affordable Care Act and number of comorbid health conditions were analysed.</p> </section> <section> <h3> Results</h3> <p>Patients with IDNDs overall had higher rates of COVID-19 hospitalisation than those without IDNDs (35.01% vs. 12.65%, <i>P</i> < .0001) and had higher rates of COVID-19 mortality than those without IDNDs (4.94% vs. .88%, <i>P</i> < .0001). Adjusting for sociodemographic factors only, the odds of being hospitalised for COVID-19 associated with IDNDs was 4.05 [95% confidence interval (CI) 3.56–4.61]. Adjusting for sociodemographic factors and comorbidity count, the odds of hospitalisation for COVID-19 associated with IDNDs was 1.42 (95% CI 1.25–1.61). The odds of mortality from COVID-19 for individuals with IDNDs adjusted for sociodemographic factors only was 4.65 (95% CI 3.47–6.24). The odds of mortality from COVID-19 for patients with IDNDs adjusted for sociodemographic factors and comorbidity count was 2.70 (95% CI 2.03–3.60). A major finding of the study was that even when considering the different demographic structure and generally higher disease burden of patients with IDNDs, having a IDND was an independent risk factor for increased hospitalisation and mortality compared with patients without IDNDs.</p> </section> <section> <h3> Conclusions</h3> <p>Individuals with IDNDs had significantly higher odds of hospitalisation and mortality after adjusting for sociodemographics. Results remained significant with a slight attenuation after adjusting for sociodemographics and comorbidities. Adjustments for comorbidity count demonstrated a dose–response increase in odds of both hospitalisation and mortality, illustrating the cumulative effect of health con

背景：智障（IDs）和神经遗传病（IDNDs）患者合并症的风险更大，当他们感染2019年冠状病毒病（COVID-19）时，可能会增加该人群的不良后果。本研究的目的是在控制社会人口统计学和合并症的前提下，研究患有和不患有COVID-19的私人投保人的住院和死亡几率：这是一项回顾性横断面研究，研究对象是2020年2月至2020年9月期间被诊断出患有COVID-19的752 237名身份不明的美国私人保险患者中的1174名患有IDs和神经遗传病的患者。分析了COVID-19患者中IDNDs患者的住院和死亡几率，并对人口特征、卫生资源和服务管理局地区、实施平价医疗法案的州以及合并症数量进行了调整：与无 IDNDs 患者相比，IDNDs 患者的 COVID-19 住院率总体更高（35.01% 对 12.65%，P 结论：IDNDs 患者的 COVID-19 住院率总体更高（35.01% 对 12.65%，P 结论）：在对社会人口统计学因素进行调整后，IDNDs患者的住院率和死亡率明显更高。在对社会人口统计学和合并症进行调整后，结果仍很明显，但略有下降。对合并症计数进行调整后，住院和死亡几率均呈剂量反应上升，这说明了健康问题对 COVID-19 结果的累积效应。总之，研究结果突出表明，IDNDs患者容易受到COVID-19负面健康结果的影响，这对获得全面的医疗保健服务具有重要意义。

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引用次数: 0

Analysis of the centre of pressure in bipedal stance among individuals with and without intellectual disabilities, individuals with Down syndrome and dancers with Down syndrome 分析智障和非智障人士、唐氏综合症患者和唐氏综合症舞者在双足站立时的压力中心。

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-13 DOI: 10.1111/jir.13127

N. Massó-Ortigosa, F. Rey-Abella, L. Gutiérrez-Vilahú, R. Milà, M. Guerra-Balic, G. R. Oviedo

Background

Individuals with intellectual disabilities (IDs) often present deficiencies in motor, balance and postural control. On the other hand, the practice of physical activity and dance usually reduces these deficiencies. Therefore, in this study, we aimed to compare the control of the centre of pressure (COP) in people with Down syndrome (DS) or other causes of ID in relation to people without disabilities and to observe the influence of vision and the practice of dance.

Methods

This cross-sectional study analyses the COP in a static standing position with open and closed eyes in four study groups. A total of 273 people were recruited (80 adults without ID, 46 adults with DS, 120 adults with other causes of ID and 27 dancers with DS).

Results

A greater area of oscillation and path of the COP was observed in the participants with ID compared with the participants without ID, especially in the sway area of the COP. The oscillation speed of the COP was also higher. When analysing the displacement of the COP, anteroposterior and mediolateral components, there were also differences, except when comparing the group of dancers with DS with respect to the group without ID. The visual condition only influenced the group of participants without disabilities.

Conclusions

The results of our study show that there is a less efficient static postural control in people with ID, as greater displacements were observed in the COP of the participants with ID. The differences in some specific variables that analyse the displacement of the COP were smaller when comparing the group of dancers with DS and the individuals without ID.

背景：智障人士通常在运动、平衡和姿势控制方面存在缺陷。另一方面，体育活动和舞蹈练习通常会减少这些缺陷。因此，在本研究中，我们旨在比较唐氏综合症（DS）患者或其他原因导致的智障人士与非智障人士对压力中心（COP）的控制情况，并观察视力和舞蹈练习的影响：这项横断面研究分析了四个研究小组在睁眼和闭眼静态站立姿势下的 COP。共招募了 273 人（80 名非智障成人、46 名智障成人、120 名智障成人和 27 名智障舞者）：结果：与非智障者相比，智障者的COP摆动面积和路径更大，尤其是在COP的摇摆区域。同时，COP 的摆动速度也更快。在分析 COP 的位移、前胸位移和内外侧位移时，也存在差异。视觉条件只对无残疾的参与者有影响：我们的研究结果表明，智障者的静态姿势控制效率较低，因为在智障参与者的COP中观察到了更大的位移。在分析COP位移的一些特定变量方面，有残疾的舞者组和无残疾的舞者组之间的差异较小。

{"title":"Analysis of the centre of pressure in bipedal stance among individuals with and without intellectual disabilities, individuals with Down syndrome and dancers with Down syndrome","authors":"N. Massó-Ortigosa, F. Rey-Abella, L. Gutiérrez-Vilahú, R. Milà, M. Guerra-Balic, G. R. Oviedo","doi":"10.1111/jir.13127","DOIUrl":"10.1111/jir.13127","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities (IDs) often present deficiencies in motor, balance and postural control. On the other hand, the practice of physical activity and dance usually reduces these deficiencies. Therefore, in this study, we aimed to compare the control of the centre of pressure (COP) in people with Down syndrome (DS) or other causes of ID in relation to people without disabilities and to observe the influence of vision and the practice of dance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This cross-sectional study analyses the COP in a static standing position with open and closed eyes in four study groups. A total of 273 people were recruited (80 adults without ID, 46 adults with DS, 120 adults with other causes of ID and 27 dancers with DS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A greater area of oscillation and path of the COP was observed in the participants with ID compared with the participants without ID, especially in the sway area of the COP. The oscillation speed of the COP was also higher. When analysing the displacement of the COP, anteroposterior and mediolateral components, there were also differences, except when comparing the group of dancers with DS with respect to the group without ID. The visual condition only influenced the group of participants without disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results of our study show that there is a less efficient static postural control in people with ID, as greater displacements were observed in the COP of the participants with ID. The differences in some specific variables that analyse the displacement of the COP were smaller when comparing the group of dancers with DS and the individuals without ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 5","pages":"524-536"},"PeriodicalIF":3.6,"publicationDate":"2024-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13127","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139729738","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

Sexual experiences and knowledge of people with moderate intellectual disability 中度智障者的性经验和性知识

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-02 DOI: 10.1111/jir.13125

V. Estruch-García, M. D. Gil-Llario, O. Fernández-García

Background

This study addresses the sexuality of people with moderate intellectual disabilities (PMID), a topic that has been little studied. Understanding romantic and sexual experiences is highly relevant for reducing stigma and prejudice related to their sexuality. Additionally, comprehending the level of sexual knowledge of PMID contributes to the development of preventive and sexual health education programmes tailored for this group. Our aim is to explore the sexual history (relationships, sexual behaviour, condom use and sexual abuse), sex education received and the level of sexual knowledge of PMID.

Method

The total of 142 PMID completed questionnaires about sexual knowledge and experiences, and their support staff provided additional information. Data were analysed using chi-square test (χ²) and descriptive statistical analysis.

Results

Masturbation was the most common sexual behaviour (75.7%), especially among men (χ² = 5.81, P < 0.05). Sexual intercourse was rare, and only 30.5% reported using condoms. Women reported a higher prevalence of self-reported sexual abuse (27.3% vs. 6% in men). The study also highlighted misconceptions about sexual intercourse risks and contraceptive methods.

Conclusion

The results suggest that PMID need sexual education to ensure healthy sexual experiences and prevent risky behaviour.

本研究探讨的是中度智障人士（PMID）的性问题，对这一话题的研究很少。了解中度智障人士的浪漫经历和性经历，对于减少与性有关的污名化和偏见具有重要意义。此外，了解中度智障人士（PMID）的性知识水平有助于为这一群体量身定制预防和性健康教育计划。我们的目的是探究 PMID 的性史（恋爱关系、性行为、安全套使用和性虐待）、所接受的性教育和性知识水平。

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引用次数: 0

Phenotyping Down syndrome: discovery and predictive modelling with electronic medical records 唐氏综合征表型：利用电子病历进行发现和预测建模

IF 3.6 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-02-01 DOI: 10.1111/jir.13124

T. Q. Nguyen, C. I. Kerley, A. P. Key, A. C. Maxwell-Horn, Q. S. Wells, J. L. Neul, L. E. Cutting, B. A. Landman

<div> <section> <h3> Background</h3> <p>Individuals with Down syndrome (DS) have a heightened risk for various co-occurring health conditions, including congenital heart disease (CHD). In this two-part study, electronic medical records (EMRs) were leveraged to examine co-occurring health conditions among individuals with DS (Study 1) and to investigate health conditions linked to surgical intervention among DS cases with CHD (Study 2).</p> </section> <section> <h3> Methods</h3> <p>De-identified EMRs were acquired from Vanderbilt University Medical Center and facilitated creating a cohort of <i>N</i> = 2282 DS cases (55% females), along with comparison groups for each study. In Study 1, DS cases were one-by-two sex and age matched with samples of case–controls and of individuals with <i>other</i> intellectual and developmental difficulties (IDDs). The phenome-disease association study (PheDAS) strategy was employed to reveal co-occurring health conditions in DS versus comparison groups, which were then ranked for how often they are discussed in relation to DS using the PubMed database and <i>Novelty Finding Index</i>. In Study 2, a subset of DS individuals with CHD [<i>N</i> = 1098 (48%)] were identified to create longitudinal data for <i>N</i> = 204 cases with surgical intervention (19%) versus 204 case–controls. Data were included in predictive models and assessed which model-based health conditions, when more prevalent, would increase the likelihood of surgical intervention.</p> </section> <section> <h3> Results</h3> <p>In Study 1, relative to case–controls and those with <i>other</i> IDDs, co-occurring health conditions among individuals with DS were confirmed to include heart failure, pulmonary heart disease, atrioventricular block, heart transplant/surgery and primary pulmonary hypertension (circulatory); hypothyroidism (endocrine/metabolic); and speech and language disorder and Alzheimer's disease (neurological/mental). Findings also revealed more versus less prevalent co-occurring health conditions in individuals with DS when comparing with those with <i>other</i> IDDs. Findings with high <i>Novelty Finding Index</i> were abnormal electrocardiogram, non-rheumatic aortic valve disorders and heart failure (circulatory); acid–base balance disorder (endocrine/metabolism); and abnormal blood chemistry (symptoms). In Study 2, the predictive models revealed that among individuals with DS and CHD, presence of health conditions such as congestive heart failure (circulatory), valvular heart disease and cardiac shunt (congenital), and pleural effusion and pulmonary collapse (respiratory) were associated with increased likelihood of surgical intervention.</p> </section> <section>

唐氏综合征（DS）患者罹患各种并发症（包括先天性心脏病（CHD））的风险较高。在这项由两部分组成的研究中，我们利用电子病历 (EMR) 来检查唐氏综合症患者的并发症（研究 1），并调查唐氏综合症合并先天性心脏病病例中与手术干预相关的健康状况（研究 2）。

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引用次数: 0