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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 Medicine 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

Background: 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.

Methods: 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.

Results: 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 could be attributed to the presence of a single core-component or a combination of similar core components in interventions. The intervention-level meta-analysis for weight management outcomes showed that none of the interventions were associated with a statistically significant change in outcomes when compared with treatment-as-usual an

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 Medicine 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。
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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 Medicine 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 Medicine 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。
{"title":"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","authors":"S. C. Westrop,&nbsp;D. Rana,&nbsp;N. Jaiswal,&nbsp;O. Wu,&nbsp;A. M. McGarty,&nbsp;C. Melville,&nbsp;L. Ells,&nbsp;P. Lally,&nbsp;M. McEwan,&nbsp;L. Harris,&nbsp;E. Germeni","doi":"10.1111/jir.13120","DOIUrl":"10.1111/jir.13120","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>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).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13120","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139912773","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
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 Medicine Pub Date : 2024-02-19 DOI: 10.1111/jir.13116
A. Davis, N. Copeland-Linder, K. Phuong, H. Belcher, K. van Eck

Background

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.

Methods

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.

Results

Patients with IDNDs overall had higher rates of COVID-19 hospitalisation than those without IDNDs (35.01% vs. 12.65%, P < .0001) and had higher rates of COVID-19 mortality than those without IDNDs (4.94% vs. .88%, P < .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.

Conclusions

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 Medicine 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。
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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 Medicine Pub Date : 2024-02-02 DOI: 10.1111/jir.13125
V. Estruch-García, M. D. Gil-Llario, O. Fernández-García
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.
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 Medicine 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
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).
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
The stigma of intellectual disability in Spain: a nationally representative survey. 西班牙智障者的耻辱感:一项具有全国代表性的调查。
IF 3.6 2区 医学 Q1 Medicine Pub Date : 2024-01-23 DOI: 10.1111/jir.13122
S Zamorano, A B Santos-Olmo, I Sánchez-Iglesias, I Muñoz-Lara, M Muñoz

Background: Stigma towards people with intellectual disability affects various aspects of their lives, including access to employment, housing, health and social care services. Furthermore, this stigma reduces their social opportunities and is even reflected in laws that diminish their autonomy. Due to the practical significance of this issue, the aim of this research is to explore for the first time the social stigma associated with intellectual disability in a representative sample of the Spanish population.

Method: A cross-sectional quantitative descriptive study was conducted, involving a representative sample of the population (N = 2746). The study includes descriptive analyses and hierarchical regressions to examine various dimensions of stigma, such as attitudes, attributions, and intentions of social distance.

Results: Medium levels of stigma are found regarding attitudes and attributions towards people with intellectual disability, while levels are medium-low concerning the intention of social distance. The most reliable indicators of stigma across its various dimensions encompass attitudes, attributions, and the intention of social distance. Factors that contribute to lower stigma include knowing someone with an intellectual disability, being willing to discuss intellectual disability with an acquaintance who has it and having a progressive political ideology. People with intellectual disability show more negative attributions towards themselves. Living with a person with an intellectual disability is another predictor of more stigmatising attitudes, but less intention of social distance. Results are mixed regarding age, gender, and educational level.

Conclusion: Combating the stigmatisation of people with intellectual disabilities must include comprehensive actions to address attitudes, attributions and behavioural intentions. Public policies, such as national campaigns and programmes, should include contact with and open conversations about intellectual disability, and sensitivity to sociodemographic variables.

背景:对智障人士的成见影响到他们生活的各个方面,包括获得就业、住房、医疗和社会护理服务。此外,这种成见减少了他们的社会机会,甚至反映在法律中,削弱了他们的自主权。鉴于这一问题的现实意义,本研究旨在首次从西班牙人口的代表性样本中探讨与智力残疾相关的社会成见:进行了一项横断面定量描述性研究,涉及具有代表性的人口样本(N = 2746)。研究包括描述性分析和分层回归,以考察成见的各个维度,如态度、归因和社会距离意图:在对智障人士的态度和归因方面,成见程度处于中等水平,而在社会距离意向方面,成见程度处于中等偏下水平。成见在各个维度上最可靠的指标包括态度、归因和社会距离意向。有助于降低成见的因素包括认识智障人士、愿意与智障熟人讨论智障问题以及具有进步的政治意识形态。智障人士对自己表现出更多的负面归因。与智障人士生活在一起是另一个预测因素,表明智障人士的鄙视态度更强,但社会距离感较弱。在年龄、性别和教育水平方面的结果不一:消除对智障人士的鄙视必须包括针对态度、归因和行为意向的综合行动。公共政策,如国家运动和计划,应包括与智障人士的接触和有关智障人士的公开对话,以及对社会人口变量的敏感性。
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引用次数: 0
Characterising the social interaction style of autism in young adult males with fragile X syndrome. 描述患有脆性 X 综合征的年轻男性自闭症患者的社交互动方式。
IF 3.6 2区 医学 Q1 Medicine Pub Date : 2024-01-23 DOI: 10.1111/jir.13121
C Moser, A Campanelli, L Friedman, A J Thurman, J E Roberts, L Abbeduto, J Klusek

Background: The characterisation of autism in fragile X syndrome (FXS) has been a source of controversy due to the complexity of disentangling autism traits from common features of the FXS phenotype. Autism in FXS is significantly underdiagnosed in the community, which may be partly due to insufficient clinical description of the social interaction profile of autism within the FXS phenotype. In this study, we applied a classic framework for characterising social interaction styles in autism to a sample of young adult males with FXS and co-occurring autism to enhance understanding of how the social challenges associated with autism manifest within FXS.

Methods: Participants were 41 males (M age = 18 years) with FXS and co-occurring autism. Interaction samples were coded for expression of predominately 'active' (characterised by a desire to make social approaches) or 'passive' (characterised by lack of initiation of social approach towards others) interaction profiles. Differences in the expression of phenotypic features of FXS, including anxiety, attention-deficit/hyperactivity disorder, cognitive, adaptive and language impairments and autism symptom severity, were examined across those with passive and active interaction styles.

Results: Approximately half of the sample was classified as active and half as passive, demonstrating diversity in the social phenotype of autism associated with FXS. The two subtypes did not differ in autism severity, anxiety or attention-deficit/hyperactivity disorder symptoms or in cognitive, adaptive or language abilities.

Conclusions: This study enhances understanding of FXS-associated autism by documenting phenotypic variability in the social interaction profile in this group, with active and passive social interaction styles represented. The two social interaction styles were not associated with differential expression of common phenotypic features of FXS, suggesting similar support needs.

背景:脆性 X 综合征(FXS)中自闭症的特征一直备受争议,因为要将自闭症特征与 FXS 表型的共同特征区分开来非常复杂。在社区中,FXS 自闭症的诊断率明显偏低,部分原因可能是对 FXS 表型中自闭症的社会交往特征的临床描述不足。在本研究中,我们将描述自闭症社交互动方式的经典框架应用于FXS和共患自闭症的年轻成年男性样本,以加深对自闭症相关社交挑战如何在FXS中表现出来的理解:参与者为 41 名患有 FXS 和并发自闭症的男性(平均年龄 = 18 岁)。互动样本被编码为主要表现为 "主动"(以渴望接近他人为特征)或 "被动"(以不主动接近他人为特征)的互动特征。我们还研究了被动型和主动型互动风格的 FXS 患者在焦虑、注意力缺陷/多动障碍、认知、适应和语言障碍以及自闭症症状严重程度等表型特征方面的表现差异:结果:大约一半的样本被归类为主动型,一半被归类为被动型,这表明与 FXS 相关的自闭症社交表型具有多样性。这两种亚型在自闭症严重程度、焦虑或注意力缺陷/多动障碍症状或认知、适应或语言能力方面没有差异:本研究通过记录该群体社交互动特征的表型变异(包括主动和被动社交互动风格),加深了人们对 FXS 相关自闭症的了解。这两种社交互动方式与 FXS 常见表型特征的不同表现无关,这表明他们需要类似的支持。
{"title":"Characterising the social interaction style of autism in young adult males with fragile X syndrome.","authors":"C Moser, A Campanelli, L Friedman, A J Thurman, J E Roberts, L Abbeduto, J Klusek","doi":"10.1111/jir.13121","DOIUrl":"10.1111/jir.13121","url":null,"abstract":"<p><strong>Background: </strong>The characterisation of autism in fragile X syndrome (FXS) has been a source of controversy due to the complexity of disentangling autism traits from common features of the FXS phenotype. Autism in FXS is significantly underdiagnosed in the community, which may be partly due to insufficient clinical description of the social interaction profile of autism within the FXS phenotype. In this study, we applied a classic framework for characterising social interaction styles in autism to a sample of young adult males with FXS and co-occurring autism to enhance understanding of how the social challenges associated with autism manifest within FXS.</p><p><strong>Methods: </strong>Participants were 41 males (M age = 18 years) with FXS and co-occurring autism. Interaction samples were coded for expression of predominately 'active' (characterised by a desire to make social approaches) or 'passive' (characterised by lack of initiation of social approach towards others) interaction profiles. Differences in the expression of phenotypic features of FXS, including anxiety, attention-deficit/hyperactivity disorder, cognitive, adaptive and language impairments and autism symptom severity, were examined across those with passive and active interaction styles.</p><p><strong>Results: </strong>Approximately half of the sample was classified as active and half as passive, demonstrating diversity in the social phenotype of autism associated with FXS. The two subtypes did not differ in autism severity, anxiety or attention-deficit/hyperactivity disorder symptoms or in cognitive, adaptive or language abilities.</p><p><strong>Conclusions: </strong>This study enhances understanding of FXS-associated autism by documenting phenotypic variability in the social interaction profile in this group, with active and passive social interaction styles represented. The two social interaction styles were not associated with differential expression of common phenotypic features of FXS, suggesting similar support needs.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139520019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Journal of Intellectual Disability Research
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