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IASSIDD World Congress 2024: Reimagining connections IASSIDD 2024 年世界大会:重新构想连接。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-06-07 DOI: 10.1111/jir.13165
K. R. McVilly, A. Buchanan, C. Adnams, T. Heller
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引用次数: 0
Validation of the Persian version of the attitudes toward intellectual disability 验证波斯语版的智障人士态度。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-30 DOI: 10.1111/jir.13161
R. Khalili, Z. Asgari, A. Kamrani, D. Morin

Background

Attitudes toward individuals with intellectual disability (ID) are the most important factor affecting their social integration and can cause them to experience a sense of achievement or discrimination. The present study aimed to evaluate the latent factor structure and validity of the Persian version of the Attitudes toward Intellectual Disability (ATTID) Short-Form questionnaire.

Methods

The latent factor structure of the Persian version of the ATTID Short-Form was established in a convenient sample of the general population (N = 280) in Iran. The structural validity and temporal reliability, internal consistency and confirmatory factor analysis were evaluated. Data analysis was done with SPSS v23 Windows edition and R v4.2.1.

Results

The Persian version of the ATTID Short-Form was shown to have a five-factor structure: discomfort, knowledge of capacity, interaction, sensitivity and knowledge of cause. The structure was appropriately fit according to the fit indices (χ2(485) = 530.12), (P-value = 0.077). All the subscales had good temporal reliability.

Conclusions

Findings suggest that the Persian version of the Short-Form of ATTID is a brief, valid and reliable measure that can be used in research and clinical practice.

背景:对智障人士(ID)的态度是影响他们融入社会的最重要因素,可使他们体验到成就感或歧视感。本研究旨在评估波斯语版《对智障人士的态度》(ATTID)短式问卷的潜在因素结构和有效性:方法:通过对伊朗普通人群(280 人)进行抽样调查,确定了波斯语版 ATTID 短式问卷的潜在因素结构。对结构效度和时间信度、内部一致性和确认性因素分析进行了评估。数据分析采用 SPSS v23 Windows 版和 R v4.2.1 进行:结果表明,ATTID 短式问卷的波斯语版本具有五因素结构:不适、能力知识、互动、敏感和原因知识。根据拟合指数(χ2(485) = 530.12),该结构具有适当的拟合度(P 值 = 0.077)。所有分量表都具有良好的时间信度:研究结果表明,波斯语版的 ATTID 短表是一种简短、有效和可靠的测量方法,可用于研究和临床实践。
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引用次数: 0
Behavioural phenotype of SYNGAP1-related intellectual disability SYNGAP1相关智障的行为表型。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-23 DOI: 10.1111/jir.13145
M. P. Kranak, G. Rooker, C. Smith-Hicks

Background

SYNGAP1- related intellectual disability (SYNGAP1-ID) is a rare genetic disorder presenting with intellectual disability (ID), epilepsy, maladaptive behaviours and communication challenges. To date, few studies have assessed the context in which these maladaptive behaviours occur. This study aims to investigate the prevalence of problem behaviours, characterise the behavioural phenotype and use well-validated measures to explore variables that maintain the behaviours.

Methods

Our sample includes 19 individuals diagnosed with SYNGAP1-ID and their parents. Parents provided information on behaviours that their children engage in, as well as their general behavioural dispositions. Well-validated measures (e.g., the Repetitive Behaviour Scale-Revised, Sensory Profile-2 and Vineland Adaptive Behaviour Scale) were used. A subset of individuals underwent further direct experimental assessment of their problem behaviour to identify the variables maintaining those problem behaviours. Parental reports were analysed using nonparametric statistical analysis; the direct assessments of individuals' problem behaviour were analysed using visual analysis and validated supplemental measures.

Results

All 19 individuals engaged in some form of maladaptive problem behaviour. Ratings of ritualistic, sameness and restricted behaviours measured by the RBS-R were commensurate with individuals diagnosed with idiopathic autism spectrum disorder (ASD) while self-injurious behaviours were endorsed at a higher level in SYNGAP1-ID when compared with idiopathic ASD. The problem behaviours in our cohort of patients with SYNGAP1-ID were maintained by automatic reinforcement and social attention and are positively correlated with atypical sensory responses.

Conclusions

Individuals with SYNGAP1-ID engage in problem behaviours commensurate with other populations (e.g., those with ASD), they exhibit atypical response to sensory stimuli. Problem behaviours were frequently maintained by automatic reinforcement, which may result from a dysregulated sensory system. Children with SYNGAP1-ID may benefit from strategies used in persons with ASD.

背景:SYNGAP1-相关智障(SYNGAP1-ID)是一种罕见的遗传性疾病,表现为智障(ID)、癫痫、适应不良行为和沟通障碍。迄今为止,很少有研究对这些适应不良行为发生的背景进行评估。本研究旨在调查问题行为的发生率,描述行为表型的特征,并使用经过充分验证的测量方法来探讨维持这些行为的变量:我们的样本包括 19 名被诊断为 SYNGAP1-ID 的患者及其父母。父母提供了有关子女行为的信息,以及他们的一般行为倾向。他们使用了经过充分验证的测量方法(如重复行为量表(Repetitive Behaviour Scale-Revised)、感官档案-2(Sensory Profile-2)和文兰适应行为量表(Vineland Adaptive Behaviour Scale))。对一部分人的问题行为进行了进一步的直接实验评估,以确定维持这些问题行为的变量。父母的报告采用非参数统计分析法进行分析;对个人问题行为的直接评估采用视觉分析法和经过验证的补充测量法进行分析:所有 19 人都有某种形式的适应不良问题行为。RBS-R对仪式性、同一性和限制性行为的评分与被诊断为特发性自闭症谱系障碍(ASD)的患者一致,而与特发性自闭症相比,SYNGAP1-ID患者的自伤行为评分更高。SYNGAP1-ID患者的问题行为是通过自动强化和社会关注维持的,并且与不典型的感官反应呈正相关:结论:SYNGAP1-ID 患者的问题行为与其他人群(如 ASD 患者)相同,他们对感官刺激的反应不典型。问题行为经常通过自动强化来维持,这可能是感官系统失调的结果。患有 SYNGAP1-ID 的儿童可能会从 ASD 患者采用的策略中受益。
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引用次数: 0
The inequity of education, health and care plan provision for children and young people with intellectual and developmental disabilities 为有智力和发育障碍的儿童和青少年提供的教育、健康和护理计划不公平。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-22 DOI: 10.1111/jir.13139
I. O. Lee, J. Wolstencroft, H. Housby, M. B. M. van den Bree, S. J. R. A. Chawner, J. Hall, IMAGINE ID Consortium, D. H. Skuse
<div> <section> <h3> Background</h3> <p>Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being.</p> </section> <section> <h3> Methods</h3> <p>We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6–28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15–16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated.</p> </section> <section> <h3> Results</h3> <p>In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regar
背景:与普通人相比,有智力和发育障碍的儿童和青少年(CYP)有很大的额外教育需求。在英格兰,政府建立了一套教育、健康和护理计划(EHCPs)系统,为有特殊教育需求和残疾的儿童提供支持,但在需求程度和可获得的支持之间存在差异。我们对患有罕见致病基因组变异的儿童进行了一项前瞻性英国全国队列研究(IMAGINE),以调查相关的神经精神风险。随后,我们从英国全国学生数据库中获取了他们在公立学校系统中的教育进展信息。我们的目的是确定他们是否接受过 EHCP 服务,以及这种支持是否与其家庭的社会经济地位、居住地区、种族、性别、主要特殊教育需求类型、学习成绩和心理健康福祉相关:我们在 2014 年至 2019 年期间从英格兰招募了 2738 名儿童参加 IMAGINE 研究。参与者(6-28 岁,平均 ± 标准差 = 14 ± 4 岁,56% 为男性)的教育经历来自教育部 2021 年的全国学生数据库。教育数据包括早年基础阶段的学业成绩(结果):在这批儿童中,78% 的参与者已获得幼儿健康和特殊教育需要计划(EHCP)。生活在最贫困的十分位数的儿童青少年,无论其智力发育障碍程度、学业成绩或相关的心理健康问题如何,与生活在最不贫困的十分位数的儿童青少年相比,获得 EHCP 支持的可能性要低得多。没有性别差异。与综合指数十分位数相同的白人儿童相比,亚裔儿童更有可能获得 "特殊幼儿保育和康复计划"。地区差异显著。居住在伦敦的参与者被授予 "特殊健康需求计划 "的可能性明显高于居住在英格兰其他地方的参与者,无论他们的IMD十分位数是多少;那些居住在最贫困的十分位数的参与者几乎100%被授予 "特殊健康需求计划":本研究发现,有证据表明,在向有已知遗传病因的严重智力障碍的儿童颁发《幼儿健康和特殊教育需要计划》方面,存在全国性的地区差异。教育当局所获资金的差异可能是一个促成因素。家长对其子女的支持力度可能会影响到对幼儿健康成长计划的支持。
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引用次数: 0
A retrospective cohort study of prescription drug use among youth with intellectual/developmental disabilities in British Columbia 不列颠哥伦比亚省智力/发育障碍青少年处方药使用情况回顾性队列研究。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-21 DOI: 10.1111/jir.13147
S. Marquis, N. E. Marquis, Y. Lunsky, K. M. McGrail, J. Baumbusch

Background

People with intellectual/developmental disabilities (IDD) are known to have high rates of prescription drug use, particularly for psychotropic medications. This is of concern due to the many side effects associated with these medications and because of the risks of polypharmacy. In this paper we compare the most commonly dispensed drugs and all psychotropic medications for youth with IDD compared with youth without IDD.

Methods

Using population-level administrative health data over a 10-year period, this study examined medications dispensed to youth with an IDD aged 15–24 years compared with youth without an IDD. The most common medications dispensed and the number of youth they were dispensed to were determined. As well a wide variety of psychotropic medications were examined.

Results

There were a total of 20 591 youth with IDD and 1 293 791 youth without IDD identified. Youth with IDD had higher odds of being dispensed pain medications, amoxicillin, salbutamol, levothyroxine and all the psychotropic medications (antidepressants, antipsychotics, anxiolytics, anti-adrenergic agents, mood stabilisers and stimulants). For youth with IDD, 6558 (31.85%) were dispensed two or more different psychotropic medications within a year, compared with 75 963 (5.87%) of youth without IDD.

Discussion

Compared to youth without IDD, youth with IDD had significantly higher odds of being dispensed most of the prescription medications studied, including all of the psychotropic medications. They were also twice as likely to be dispensed two or more medications from different classes of psychotropic drugs within the same year. These findings have important implications for the health of people with IDD and for their health care providers.

背景:众所周知,智力/发育障碍(IDD)患者的处方药使用率很高,尤其是精神药物。由于这些药物有很多副作用,而且存在多种用药的风险,因此这种情况令人担忧。在本文中,我们对患有 IDD 的青少年与未患有 IDD 的青少年最常使用的药物和所有精神药物进行了比较:本研究利用 10 年间的人口健康管理数据,对 15-24 岁患有 IDD 的青少年与未患有 IDD 的青少年的配药情况进行了比较。研究确定了最常见的配药及其配药人数。此外,还对各种精神药物进行了研究:共有 20 591 名患有 IDD 的青少年和 1 293 791 名未患有 IDD 的青少年被确认。患有 IDD 的青少年获得止痛药、阿莫西林、沙丁胺醇、左甲状腺素和所有精神药物(抗抑郁药、抗精神病药、抗焦虑药、抗肾上腺素能药、情绪稳定剂和兴奋剂)的几率更高。在患有 IDD 的青少年中,有 6558 人(31.85%)在一年内被配发了两种或两种以上不同的精神药物,而在没有 IDD 的青少年中,有 75963 人(5.87%)被配发了两种或两种以上不同的精神药物:讨论:与非智障青少年相比,智障青少年获得大部分处方药(包括所有精神药物)的几率明显更高。此外,他们在同一年内获得两种或两种以上不同类别精神药物的几率也要高出一倍。这些发现对 IDD 患者及其医疗服务提供者的健康具有重要意义。
{"title":"A retrospective cohort study of prescription drug use among youth with intellectual/developmental disabilities in British Columbia","authors":"S. Marquis,&nbsp;N. E. Marquis,&nbsp;Y. Lunsky,&nbsp;K. M. McGrail,&nbsp;J. Baumbusch","doi":"10.1111/jir.13147","DOIUrl":"10.1111/jir.13147","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual/developmental disabilities (IDD) are known to have high rates of prescription drug use, particularly for psychotropic medications. This is of concern due to the many side effects associated with these medications and because of the risks of polypharmacy. In this paper we compare the most commonly dispensed drugs and all psychotropic medications for youth with IDD compared with youth without IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using population-level administrative health data over a 10-year period, this study examined medications dispensed to youth with an IDD aged 15–24 years compared with youth without an IDD. The most common medications dispensed and the number of youth they were dispensed to were determined. As well a wide variety of psychotropic medications were examined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>There were a total of 20 591 youth with IDD and 1 293 791 youth without IDD identified. Youth with IDD had higher odds of being dispensed pain medications, amoxicillin, salbutamol, levothyroxine and all the psychotropic medications (antidepressants, antipsychotics, anxiolytics, anti-adrenergic agents, mood stabilisers and stimulants). For youth with IDD, 6558 (31.85%) were dispensed two or more different psychotropic medications within a year, compared with 75 963 (5.87%) of youth without IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Compared to youth without IDD, youth with IDD had significantly higher odds of being dispensed most of the prescription medications studied, including all of the psychotropic medications. They were also twice as likely to be dispensed two or more medications from different classes of psychotropic drugs within the same year. These findings have important implications for the health of people with IDD and for their health care providers.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 10","pages":"1156-1166"},"PeriodicalIF":2.1,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141076050","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
Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID-G) in Down's syndrome 德文版唐氏综合征智障人士痴呆症筛查问卷(DSQIID-G)的验证。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-17 DOI: 10.1111/jir.13144
G. Nuebling, O. Wagemann, S. Deb, E. Wlasich, S. V. Loosli, K. Sandkühler, A. Stockbauer, C. Prix, J. Levin

Background

People with Down's syndrome (DS) are at high risk of developing Alzheimer dementia (DS-AD) due to a triplication of the amyloid precursor protein gene. While several tools to diagnose and screen for DS-AD, such as the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID), are available in English, validated German versions of such instruments are scarce.

Methods

A German version of the DSQIID questionnaire (DSQIID-G) was completed by caregivers before attending our specialist outpatient department for DS-AD. All participants were assessed blind to DSQIID-G scoring using clinical and neuropsychological examinations, including the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). ICD-10 and amyloid/tau/neurodegeneration (A/T/N) criteria were applied to detect and categorise cognitive decline.

Results

Of 86 participants, 43 (50%) showed evidence of cognitive decline. A definite diagnosis of DS-AD was reached in 17 (19.8%) and mild cognitive impairment in seven (8.3%) participants. Secondary causes of cognitive decline were determined among 13 (15.1%) participants, and in six (7%) cases, the diagnosis remained unclassifiable due to co-morbidities. Compared with cognitively stable individuals, participants with cognitive decline (n = 43) displayed higher DSQIID-G total scores [median (range): 3 (0–21) vs. 19 (0–48), P < 0.001]. A total score of >7 provided a sensitivity of 0.94 against a specificity of 0.76, to discriminate DS-AD and participants without cognitive decline according to ROC analysis. The convergent validity against the CAMDEX-DS interview score was good (r = 0.74), and split-half reliability (r = 0.96), internal consistency (Cronbach's α r = 0.96), test–retest reliability (r = 0.88) (n = 25) and interrater reliability (r = 0.81) (n = 31) were excellent.

Conclusions

The DSQIID-G showed excellent psychometric properties, including concurrent and internal validity and reliability. The cut-off value for screening was lower than in the original English validation study. For a screening instrument like DSQIID-G, a lower cut-off is preferable to increase case detection.

背景:由于淀粉样前体蛋白基因的三倍复制,唐氏综合征(DS)患者患阿尔茨海默痴呆症(DS-AD)的风险很高。虽然有几种诊断和筛查 DS-AD 的工具,如智障人士痴呆症筛查问卷(DSQIID),有英文版,但经过验证的德文版此类工具却很少:方法:护理人员在前往我们的 DS-AD 专科门诊就诊之前,需要填写德文版的 DSQIID 问卷(DSQIID-G)。所有参与者均通过临床和神经心理学检查(包括剑桥唐氏综合征和其他智障老年人精神障碍检查(CAMDEX-DS))进行了盲法评估。采用ICD-10和淀粉样蛋白/Tau/神经变性(A/T/N)标准检测认知能力下降并进行分类:在 86 名参与者中,有 43 人(50%)出现认知能力下降。有 17 人(19.8%)确诊为 DS-AD,7 人(8.3%)确诊为轻度认知障碍。13名参与者(15.1%)确定了认知能力下降的次要原因,6名参与者(7%)因合并其他疾病而无法确诊。与认知能力稳定的人相比,认知能力下降的参与者(n = 43)显示出更高的 DSQIID-G 总分[中位数(范围):3(0-21) vs. 19]:根据 ROC 分析,DS-AD 与无认知功能衰退者的区分灵敏度为 0.94,特异度为 0.76。DSQIID-G与CAMDEX-DS访谈得分的收敛效度良好(r = 0.74),分半信度(r = 0.96)、内部一致性(Cronbach's α r = 0.96)、测试-再测信度(r = 0.88)(n = 25)和施测者间信度(r = 0.81)(n = 31)均非常出色:结论:DSQIID-G显示出良好的心理测量特性,包括并发和内部效度和信度。筛查的临界值低于最初的英语验证研究。对于像 DSQIID-G 这样的筛查工具来说,较低的临界值更有利于提高病例检出率。
{"title":"Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID-G) in Down's syndrome","authors":"G. Nuebling,&nbsp;O. Wagemann,&nbsp;S. Deb,&nbsp;E. Wlasich,&nbsp;S. V. Loosli,&nbsp;K. Sandkühler,&nbsp;A. Stockbauer,&nbsp;C. Prix,&nbsp;J. Levin","doi":"10.1111/jir.13144","DOIUrl":"10.1111/jir.13144","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with Down's syndrome (DS) are at high risk of developing Alzheimer dementia (DS-AD) due to a triplication of the <i>amyloid precursor protein</i> gene. While several tools to diagnose and screen for DS-AD, such as the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID), are available in English, validated German versions of such instruments are scarce.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A German version of the DSQIID questionnaire (DSQIID-G) was completed by caregivers before attending our specialist outpatient department for DS-AD. All participants were assessed blind to DSQIID-G scoring using clinical and neuropsychological examinations, including the <i>Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities</i> (CAMDEX-DS). ICD-10 and amyloid/tau/neurodegeneration (A/T/N) criteria were applied to detect and categorise cognitive decline.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of 86 participants, 43 (50%) showed evidence of cognitive decline. A definite diagnosis of DS-AD was reached in 17 (19.8%) and mild cognitive impairment in seven (8.3%) participants. Secondary causes of cognitive decline were determined among 13 (15.1%) participants, and in six (7%) cases, the diagnosis remained unclassifiable due to co-morbidities. Compared with cognitively stable individuals, participants with cognitive decline (<i>n</i> = 43) displayed higher DSQIID-G total scores [median (range): 3 (0–21) vs. 19 (0–48), <i>P</i> &lt; 0.001]. A total score of &gt;7 provided a sensitivity of 0.94 against a specificity of 0.76, to discriminate DS-AD and participants without cognitive decline according to ROC analysis. The convergent validity against the CAMDEX-DS interview score was good (<i>r</i> = 0.74), and split-half reliability (<i>r</i> = 0.96), internal consistency (Cronbach's α <i>r</i> = 0.96), test–retest reliability (<i>r</i> = 0.88) (<i>n</i> = 25) and interrater reliability (<i>r</i> = 0.81) (<i>n</i> = 31) were excellent.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The DSQIID-G showed excellent psychometric properties, including concurrent and internal validity and reliability. The cut-off value for screening was lower than in the original English validation study. For a screening instrument like DSQIID-G, a lower cut-off is preferable to increase case detection.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"68 10","pages":"1146-1155"},"PeriodicalIF":2.1,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13144","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140957587","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
Feeding practices and dietary intake in Brazilian children with Down syndrome: A cross-sectional study 巴西唐氏综合症儿童的喂养方式和饮食摄入量:横断面研究。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-13 DOI: 10.1111/jir.13148
M. C. R. S. Genovesio, L. S. Monteiro, A. V. da Silva, P. R. M. Rodrigues, A. P. Baumblatt, S. A. Ribas

Background

Studies investigating the quality of the diet and dietary intake of children with Down syndrome (DS) are required because the features attributed to the syndrome can affect growth, development and quality of life.

Methods

This cross-sectional study was conducted with 77 Brazilian children with DS between 5 and 36 months of age receiving care at the multidisciplinary outpatient clinic of the University Hospital. Participants' sociodemographic, dietary and anthropometric data were collected from the care protocols. Dietary data were collected from 24-h recalls and dietary practices were assessed according to the WHO dietary guidelines. Associations between inadequate feeding practices and demographic variables were assessed using logistic regression models.

Results

Fruits, milk or infant formula, vegetables, beans and meat were among the five most consumed foods by the children investigated. Overall, we observed a high number of cases of early weaning (50.6%), low minimum dietary diversity (MDD; 40.3%), inadequate consistency for age (64.9%), early presence of ultra-processed foods (76.6%), sugars and sweets (33.8%) in the diet of the children with DS. In the associations of inadequate feeding practices by age group, low MDD [odds ratio (OR): 18.6; 95% confidence interval (CI): 3.4; 57.1] and inadequate consistency (OR: 6.65; 95% CI: 1.8; 24.7) were more frequent among children aged below 12 months while this relationship was inverse for early introduction of sugar and sweets (OR: 0.04; 95% CI: 0.01; 0.29).

Conclusion

Our findings showed a high number of cases of inadequate dietary practices in children with DS investigated, which could adversely affect the long-term health of this population.

背景:需要对唐氏综合征(DS)患儿的饮食质量和饮食摄入量进行调查研究,因为该综合征的特征会影响患儿的生长、发育和生活质量:这项横断面研究的对象是在大学医院多学科门诊接受治疗的 77 名 5 至 36 个月大的巴西唐氏综合征患儿。参与者的社会人口学、饮食和人体测量数据均从护理协议中收集。膳食数据则根据世界卫生组织的膳食指南进行评估。采用逻辑回归模型评估了喂养不当与人口统计学变量之间的关系:水果、牛奶或婴儿配方奶、蔬菜、豆类和肉类是被调查儿童食用最多的五种食物。总体而言,我们发现 DS 儿童的饮食中存在大量过早断奶的情况(50.6%)、最低膳食多样性(MDD;40.3%)较低、与年龄不符的膳食一致性不足(64.9%)、过早食用超加工食品(76.6%)、糖和甜食(33.8%)。在各年龄组喂养方式不足的关联中,12 个月以下儿童的 MDD 偏低[几率比(OR):18.6;95% 置信区间(CI):3.4;57.1]和一致性不足(OR:6.65;95% CI:1.8;24.7)更为常见,而过早引入糖和甜食则与此关系相反(OR:0.04;95% CI:0.01;0.29):我们的研究结果表明,在接受调查的 DS 儿童中,饮食习惯不当的情况较多,这可能会对这一人群的长期健康产生不利影响。
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引用次数: 0
Psychometric properties of the Beliefs About Adults with ID Scale in American physicians: Application of classical test and Rasch measurement theories 美国医生对智障成人的看法量表的心理计量特性:经典测试和 Rasch 测量理论的应用。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-13 DOI: 10.1111/jir.13143
A. Bacherini, P. Anselmi, S. M. Havercamp, G. Balboni

Background

Physicians' erroneous assumptions about individuals with intellectual disability (ID) negatively impact the quality of care provided to this population. This study aimed to investigate the psychometric properties of the Beliefs About Adults with ID (BAID), an instrument we developed for measuring physicians' erroneous assumptions about adults with ID.

Methods

Two hundred ninety-two American physicians participated. Classical test theory and Rasch measurement theory were used to refine the scale (through item analysis, exploratory factor analysis, infit and outfit mean-squares statistics, and differential item functioning) and investigate its psychometric properties (functioning of the response scale, reliability, and validity).

Results

The BAID provided a unidimensional, reliable, valid, and precise measure in assessing high levels of erroneous assumptions. It showed convergent and divergent validity with the different factors of a scale measuring attitudes towards ID. The BAID items were discriminant, non-redundant, unambiguous, and invariant across gender and previous ID training. The BAID response scale was found to be appropriate for measuring physicians' erroneous assumptions about adults with ID.

Conclusions

BAID is a brief instrument with good psychometric properties to assess erroneous assumptions about adults with ID in physicians of different genders and who have/have not previously received ID training. Therefore, it might be helpful for research and medical education purposes.

背景:医生对智障人士(ID)的错误假设对为该群体提供的医疗服务质量产生了负面影响。本研究旨在调查 "关于智障成人的信念"(BAID)的心理测量特性,这是我们为测量医生对智障成人的错误假设而开发的一种工具:共有 292 名美国医生参加。采用经典测试理论和 Rasch 测量理论对量表进行了改进(通过项目分析、探索性因子分析、infit 和 outfit 均方统计以及差异项目功能),并对其心理测量特性(反应量表的功能、信度和效度)进行了研究:结果:BAID 在评估高水平错误假设方面提供了一种单维度、可靠、有效和精确的测量方法。它与测量对智障者态度的量表中的不同因子之间具有收敛和发散效度。BAID 项目具有区分性、非冗余性、明确性,并且在不同性别和以前接受过 ID 培训的情况下保持不变。BAID反应量表适用于测量医生对智障成人的错误假设:BAID是一种简短的工具,具有良好的心理测量特性,可用于评估不同性别、接受过或未接受过智障培训的医生对智障成人的错误假设。因此,它可能有助于研究和医学教育。
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引用次数: 0
Implementation of the International Classification of Diseases 11th revision behavioural indicators for disorders of intellectual development with co-occurring autism spectrum disorder 实施《国际疾病分类》第 11 次修订版中关于并发自闭症谱系障碍的智力发育障碍行为指标。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-11 DOI: 10.1111/jir.13146
K. R. Lemay, C. S. Kogan, T. Rebello, J. W. Keeley, R. Bhargava, S. Buono, S. Cooray, P. Ginige, M. T. Kishore, J. V. S. Kommu, M. Recupero, A. Roy, P. Sharan, G. M. Reed
<div> <section> <h3> Background</h3> <p>The classification of mental, behavioural and neurodevelopmental disorders in the World Health Organization's International Classification of Diseases 11th revision (ICD-11) includes a comprehensive set of behavioural indicators (BIs) within the neurodevelopmental disorders grouping. BIs can be used to assess the severity of disorders of intellectual development in situations in which standardised measures of intellectual functioning and adaptive behaviours are not available or feasible. This international study examines the implementation characteristics of the BIs and compares them to standardised measures for assessing the severity of intellectual impairment and adaptive behaviours in disorders of intellectual development and autism spectrum disorder (ASD). The clinical utility of the ICD-11 and the fidelity of its application in international clinical settings were also assessed.</p> </section> <section> <h3> Methods</h3> <p>A total of 116 children and adolescents (5–18 years old) with a suspected or established diagnosis of disorders of intellectual development were included across four sites [Italy (<i>n</i> = 18), Sri Lanka (<i>n</i> = 19) and two sites in India (<i>n</i> = 79)]. A principal component analysis was conducted to evaluate the application of the ICD-11 guidance for combining severity levels.</p> </section> <section> <h3> Results</h3> <p>Assessment using the BIs showed a higher proportion of individuals classified with mild severity, whereas the standardised measures indicated a higher proportion of severe ratings. Additionally, individuals with co-occurring ASD tended to have more severe impairments compared with those without ASD, as indicated by both BIs and standardised measures. Overall, the BIs were considered clinically useful, although more time and consideration were required when applying the guidelines for individuals with a co-occurring disorder of intellectual development and ASD. The principal component analysis revealed one principal component representing overall disorders of intellectual development severity levels.</p> </section> <section> <h3> Conclusions</h3> <p>The ICD-11 BIs can be implemented as intended in international clinical settings for a broad range of presentations of individuals with neurodevelopmental disorders. Use of the BIs results in similar severity diagnoses to those made using standardised measures. The BIs are expected to improve the reliability of severity assessments in settings where appropriate standardised measures for intellectual and adaptive
背景:世界卫生组织《国际疾病分类》第 11 版(ICD-11)对精神、行为和神经发育障碍的分类包括神经发育障碍分组中的一整套行为指标(BIs)。在没有或无法对智力功能和适应行为进行标准化测量的情况下,行为指标可用于评估智力发育障碍的严重程度。这项国际性研究考察了智力发育障碍和自闭症谱系障碍(ASD)中智力障碍和适应行为严重程度的标准化测量方法,并将其与标准化测量方法进行了比较。此外,还评估了 ICD-11 的临床实用性及其在国际临床环境中应用的忠实性:共有 116 名儿童和青少年(5-18 岁)被疑似或确诊为智力发育障碍,他们来自四个地方[意大利(n = 18)、斯里兰卡(n = 19)和印度的两个地方(n = 79)]。我们进行了主成分分析,以评估 ICD-11 指南在合并严重程度等级方面的应用:结果:使用生物统计学指标进行的评估显示,被归类为轻度严重程度的患者比例较高,而标准化测量结果显示,被归类为重度严重程度的患者比例较高。此外,BIs 和标准化测量结果均显示,与无 ASD 的患者相比,合并 ASD 的患者往往有更严重的障碍。总体而言,虽然在对同时患有智力发育障碍和 ASD 的个体应用指南时需要更多的时间和考虑,但 BIs 被认为在临床上是有用的。主成分分析显示,一个主成分代表了智力发育障碍的整体严重程度:结论:在国际临床环境中,ICD-11 BIs 可按预期用于神经发育障碍患者的各种表现。使用 BIs 所得出的诊断结果与使用标准化测量方法得出的诊断结果相似。在没有适当的智力和适应行为标准化测量方法或这些方法不可行的情况下,《国际功能、残疾和健康分类》有望提高严重程度评估的可靠性。
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引用次数: 0
Assessment of dental and periodontal indices and Streptococcus mutans virulence in fragile X syndrome patients 评估脆性 X 综合征患者的牙齿和牙周指数以及变异链球菌的毒力。
IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2024-05-08 DOI: 10.1111/jir.13142
Cristhiane Olivia Ferreira do Amaral, Kamila Rosamilia Kantovitiz, V. C. de Araújo, T. Marega, L. N. Teixeira, E. F. Martinez

Introduction

Fragile X syndrome (FXS) is the most common cause of hereditary genetic disorder in a single gene characterised by intellectual disability. Behavioural features such as autism, hyperactivity and anxiety disorder may be present. Biofilm development and pathogenicity of Streptococcus mutans may be altered because FXS renders the dental approach and oral hygiene more complex.

Objectives

The purpose of this study was to compare the levels of transcripts for VicRK and CovR of S. mutans isolated from FXS patients with the levels of transcripts for VicRK and CovR of standard strain ATCC, using a quantitative polymerase chain reaction (qPCR).

Methods

The caries experience index was assessed by the International Caries Detection and Assessment System (ICDAS), Periodontal Condition Index (PCI) and Invasive Dental Treatment Need Index (INI).

Results

The clinical index findings revealed a high rate of caries cavities and bleeding on probing of FXS patients. When VicRK and CovR transcript levels were compared with the reference strain, Fragile X patients were found to have significantly higher values.

Conclusion

The present study demonstrated that FXS patients have more adverse clinical conditions, with increased biofilm accumulation and virulence. When combined with behavioural abnormalities, these patients become even more vulnerable to dental caries.

简介脆性 X 综合征(FXS)是最常见的单基因遗传性疾病,以智力障碍为特征。患者可能存在自闭症、多动和焦虑症等行为特征。由于 FXS 使牙科治疗方法和口腔卫生变得更加复杂,突变链球菌的生物膜发育和致病性可能会发生改变:本研究的目的是使用定量聚合酶链反应(qPCR)比较从FXS患者中分离出的变异链球菌的VicRK和CovR转录本水平与标准菌株ATCC的VicRK和CovR转录本水平:方法:采用国际龋病检测和评估系统(ICDAS)、牙周状况指数(PCI)和牙科有创治疗需求指数(INI)评估龋病经历指数:临床指数结果显示,FXS 患者的龋洞率和探诊出血率很高。将 VicRK 和 CovR 转录水平与参考株进行比较,发现脆性 X 患者的数值明显更高:本研究表明,FXS 患者的临床症状更为严重,生物膜积累和致病力都有所增强。结论:本研究表明,FXS 患者的临床状况更为不利,其生物膜积累和致病力都有所增强,如果再加上行为异常,这些患者就更容易患龋齿。
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引用次数: 0
期刊
Journal of Intellectual Disability Research
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