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Which Score for What? Operationalizing Standardized Cognitive Test Performance for the Assessment of Change. 哪个分数代表什么？标准化认知测试绩效对变化评估的操作化。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-09-01 DOI: 10.1352/1944-7558-130.5.344
Cristan Farmer, Audrey Thurm, Tanvi Das, E Martina Bebin, Jonathan A Bernstein, Elizabeth Berry-Kravis, Joseph D Buxbaum, Charis Eng, Thomas Frazier, Antonio Y Hardan, Alexander Kolevzon, Darcy A Krueger, Julian A Martinez-Agosto, Hope Northrup, Craig M Powell, Latha Valluripalli Soorya, Joyce Y Wu, Mustafa Sahin
{"title":"Which Score for What? Operationalizing Standardized Cognitive Test Performance for the Assessment of Change.","authors":"Cristan Farmer, Audrey Thurm, Tanvi Das, E Martina Bebin, Jonathan A Bernstein, Elizabeth Berry-Kravis, Joseph D Buxbaum, Charis Eng, Thomas Frazier, Antonio Y Hardan, Alexander Kolevzon, Darcy A Krueger, Julian A Martinez-Agosto, Hope Northrup, Craig M Powell, Latha Valluripalli Soorya, Joyce Y Wu, Mustafa Sahin","doi":"10.1352/1944-7558-130.5.344","DOIUrl":"10.1352/1944-7558-130.5.344","url":null,"abstract":"<p><p>Developmental domains, such as cognitive, language, and motor, are key concepts of interest in longitudinal studies of intellectual and developmental disabilities (IDD). Normative scores (e.g., IQ) are often used to operationalize performance on standardized tests of these concepts, but it is the interval-distributed person-ability scores that are intended for the assessment of within-individual change. Here we illustrate the use and interpretation of several Stanford Binet, 5th Edition score types (IQ, extended IQ, Z-normalized raw score, developmental quotient, raw sum score, age equivalent, and ability score) using data from two longitudinal studies of rare genetic conditions associated with IDD. We found that, although normality assumptions were tenuous for all score types, floor effects led to model unsuitability for longitudinal analysis of most types of norm-referenced scores, and that the validity of interpretation with respect to individual change was best for ability scores.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 5","pages":"344-361"},"PeriodicalIF":2.0,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12746729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977880","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Scientists Can Do Better Including Those With Intellectual Disability in Clinical Trials. 科学家可以在临床试验中做得更好，包括那些智障人士。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-09-01 DOI: 10.1352/1944-7558-130.5.342
Alycia Halladay
{"title":"Scientists Can Do Better Including Those With Intellectual Disability in Clinical Trials.","authors":"Alycia Halladay","doi":"10.1352/1944-7558-130.5.342","DOIUrl":"https://doi.org/10.1352/1944-7558-130.5.342","url":null,"abstract":"","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 5","pages":"342-343"},"PeriodicalIF":2.0,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Longitudinal Trajectory of Adaptive Skills in Phelan-McDermid Syndrome. 费伦-麦克德米德综合征患者适应技能的纵向轨迹。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-09-01 DOI: 10.1352/1944-7558-130.5.380
Siddharth Srivastava, Kristina Johnson, Cristan Farmer, Tess Levy, Audrey Thurm, Latha Valluripalli Soorya, Rajna Filip-Dhima, Aisling Quinlan, Jonathan A Bernstein, Elizabeth Berry-Kravis, Craig M Powell, Joseph D Buxbaum, Mustafa Sahin, Alexander Kolevzon
{"title":"Longitudinal Trajectory of Adaptive Skills in Phelan-McDermid Syndrome.","authors":"Siddharth Srivastava, Kristina Johnson, Cristan Farmer, Tess Levy, Audrey Thurm, Latha Valluripalli Soorya, Rajna Filip-Dhima, Aisling Quinlan, Jonathan A Bernstein, Elizabeth Berry-Kravis, Craig M Powell, Joseph D Buxbaum, Mustafa Sahin, Alexander Kolevzon","doi":"10.1352/1944-7558-130.5.380","DOIUrl":"10.1352/1944-7558-130.5.380","url":null,"abstract":"<p><p>Phelan-McDermid syndrome (PMS), caused by SHANK3 haploinsufficiency, lacks natural history data. We report the trajectory of adaptive behavior from a prospective, longitudinal, natural history study. English-speaking people aged 3-21 years with a PMS molecular diagnosis were followed over 2 years. We analyzed longitudinal Vineland Adaptive Behavior Scales, Second Edition domain-level standard scores and subdomain-level growth scale values (GSVs) obtained at baseline, 12 months, and 24 months. We assessed within-subject time effects and cross-sectional age effects using linear mixed effects models. This sample included 99 participants (baseline age = 8.83 ± 4.58 years). Within-subject standard scores decreased/remained constant for all domains: Communication (slope of within-subject mean-centered age = -0.33 [95% CI -1.08, 0.41]; p = 0.38), Socialization (-1.25 [-1.95, -0.56]; p < 0.001), and Daily Living Skills (-0.35 [-1.37, 0.67]; p = 0.50). However, subdomain GSVs showed within-subject growth across several categories. Receptive (5.26 [2.49, 8.02]; p < 0.001) and Written (2.79 [1.11, 4.47]; p = 0.001) Communication GSVs increased. Personal (1.84 [0.81, 2.86]; p < 0.001) and Domestic (2.31 [0.98, 3.64]; p < 0.001) Daily Living Skills GSVs increased. Socialization subdomain GSVs did not change. PMS is characterized by impaired adaptive behavior and slow, small gains in communication and daily living, but not socialization skills, as measured by subdomain GSVs. Unlike standard scores, measuring performance compared to same-age peers, GSVs quantify an individual's progress, emphasizing the need for GSVs in interpreting developmental changes in PMS.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 5","pages":"380-394"},"PeriodicalIF":2.0,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977919","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Anxiety Self-Report in Autistic Adolescents With Intellectual Disability: Predictors of Parent-Youth Agreement. 孤独症青少年伴智力障碍的焦虑自我报告：亲子协议的预测因子。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.323
Elizabeth Glenn, Allison Meyer, Audrey Blakeley-Smith
{"title":"Anxiety Self-Report in Autistic Adolescents With Intellectual Disability: Predictors of Parent-Youth Agreement.","authors":"Elizabeth Glenn, Allison Meyer, Audrey Blakeley-Smith","doi":"10.1352/1944-7558-130.4.323","DOIUrl":"10.1352/1944-7558-130.4.323","url":null,"abstract":"<p><p>The use of self-report to assess anxiety in adolescents with intellectual disability (ID) is notably underexplored. This study examined the impact of youth-level factors (i.e., age, verbal and cognitive ability, adaptive skills) on anxiety self-report completion and parent-youth agreement among 72 autistic adolescents with ID. We also examined if parent accommodation behaviors, such as reassurance or routine modification, served as predictors of parent-youth agreement of anxiety. Results showed that 83% of adolescents completed the self-report measure, with verbal, cognitive, and adaptive ability predicting completion. Parental accommodation predicted parent-youth agreement on physical anxiety symptoms, but not global anxiety symptoms. Youth-level factors did not significantly predict agreement. Results highlight the need for expanded assessment approaches for assessing anxiety in youth with ID.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"323-336"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499094","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Improving Uptake in Regional Center Services: Using Program Data to Identify Predictors of Under-Utilization and Non-Utilization. 提高对区域中心服务的吸收：使用项目数据来确定未充分利用和未利用的预测因素。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.309
Robin L Dodds, Soma Roy, Hilary Wu, Amanda Belden, Cameron Hafer, Christina Toapanta
{"title":"Improving Uptake in Regional Center Services: Using Program Data to Identify Predictors of Under-Utilization and Non-Utilization.","authors":"Robin L Dodds, Soma Roy, Hilary Wu, Amanda Belden, Cameron Hafer, Christina Toapanta","doi":"10.1352/1944-7558-130.4.309","DOIUrl":"10.1352/1944-7558-130.4.309","url":null,"abstract":"<p><p>Racial/ethnic disparities in expenditures have long plagued the California regional center system. The regional center at the center of this study has removed such disparities. However, they continue to experience service under-utilization and non-utilization. Regression models were used to investigate what characteristics are predictors of total amount utilized and predict the odds of a client using any of their allocated funds. Findings show that clients who are male, under 3, don't speak English, and live in care facilities use less of their allocation. School-aged clients had lower odds of utilizing any of their allocated funds. Implications for practice include using care-coordination models in residential settings, improving training opportunities for families, and hiring cultural brokers.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"309-322"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499096","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Mindfulness and Psychoeducation Are Associated With Improved Perceived and Physiological Health Outcomes in Caregivers of Children With Autism. 正念和心理教育与自闭症儿童照顾者感知和生理健康结果的改善有关。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.280
Suzannah Iadarola, Piaopiao Cai, Michelle Porto, Karen Mustian
{"title":"Mindfulness and Psychoeducation Are Associated With Improved Perceived and Physiological Health Outcomes in Caregivers of Children With Autism.","authors":"Suzannah Iadarola, Piaopiao Cai, Michelle Porto, Karen Mustian","doi":"10.1352/1944-7558-130.4.280","DOIUrl":"10.1352/1944-7558-130.4.280","url":null,"abstract":"<p><p>Parents of autistic children can experience less favorable outcomes than the general population on objective health measures. Accordingly, interventions including behaviorally-oriented and mind-body programs are associated with decreased stress and increased mental health. Caregivers (n = 22) of autistic children (aged 5-12) were randomized to group psychoeducation or mindfulness program for 8 weeks. Psychological and physiological measures included heart rate variability (HRV), sleep, parental stress, and perceived health. Both groups demonstrated improvement HRV, perceived parental stress, and perceived global health. The mindfulness group showed some advantage, including on root mean squared successive difference, somatization, and perceptions of their child's behavior. Although preliminary, results highlight the promise of short-term interventions for improving health for caregivers of autistic children.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"280-293"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499098","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Attitudes, Assumptions, and Beliefs of Obstetric Care Clinicians Regarding Perinatal Care of Women With Intellectual and Developmental Disabilities. 产科护理临床医生对智力和发育障碍妇女围产期护理的态度、假设和信念。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.294
Lauren D Smith, Robyn M Powell, Aishwarya Khanna, Tiffany A Moore Simas, Monika Mitra
{"title":"Attitudes, Assumptions, and Beliefs of Obstetric Care Clinicians Regarding Perinatal Care of Women With Intellectual and Developmental Disabilities.","authors":"Lauren D Smith, Robyn M Powell, Aishwarya Khanna, Tiffany A Moore Simas, Monika Mitra","doi":"10.1352/1944-7558-130.4.294","DOIUrl":"10.1352/1944-7558-130.4.294","url":null,"abstract":"<p><p>This study examines clinician attitudes, beliefs, and assumptions regarding perinatal care of women with intellectual and developmental disabilities (IDD) from the perspectives of both clinicians and women with IDD. We conducted semistructured individual interviews with women (n = 16) and individual interviews and one focus group with clinicians (n = 17). Data were analyzed using a content analysis approach. Analysis revealed both supportive and restrictive categories. Supportive: (a) accommodating needs, (b) respecting autonomy, and (c) supporting motherhood. Restrictive: (a) unwillingness to accommodate, (b) assumptions about decision-making capacity, (c) questioning parenting abilities, and (d) biased contraception and sterilization practices. Clinician training to address attitudes, beliefs, and assumptions is needed to improve perinatal care for women with IDD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"294-308"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
A Transdiagnostic Comparison of Mindfulness and Parenting Stress in Mothers of Children With Autism, Developmental Delay, and Fragile X Syndrome. 自闭症、发育迟缓和脆性X综合征患儿母亲的正念和养育压力的跨诊断比较
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.249
Laurel R Benjamin, Cameron L Neece, Laura Lee McIntyre, Rachel M Fenning, Anne Edwards, Angela Gwaltney, Anne C Wheeler
{"title":"A Transdiagnostic Comparison of Mindfulness and Parenting Stress in Mothers of Children With Autism, Developmental Delay, and Fragile X Syndrome.","authors":"Laurel R Benjamin, Cameron L Neece, Laura Lee McIntyre, Rachel M Fenning, Anne Edwards, Angela Gwaltney, Anne C Wheeler","doi":"10.1352/1944-7558-130.4.249","DOIUrl":"10.1352/1944-7558-130.4.249","url":null,"abstract":"<p><p>This study compared mindfulness and parenting daily hassles (PDH) among mothers of children with autism spectrum disorder (ASD), developmental delay (DD), and Fragile X syndrome (FXS), and explored diagnostic group as a moderator of the relationship between mindfulness and PDH. Mothers of children with ASD (n = 166), DD (n = 113), and FXS (n = 74) completed measures of PDH, trait mindfulness, and mindful parenting. Mothers reported comparable levels of trait mindfulness and PDH, but the FXS group (versus ASD and DD) reported higher levels of mindful parenting. The mindful parenting/PDH relationship was negative for all groups but weaker for mothers of children with ASD (versus DD and FXS). Implications for research and practice are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"249-264"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499181","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Individual and Environmental Factors Associated With Polypsychotropic Medication Regimens Among Adults With Intellectual Disability. 智力残疾成人中与多抗精神病药物治疗方案相关的个体和环境因素。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-07-01 DOI: 10.1352/1944-7558-130.4.265
Kami L Gallus, Jennifer L Jones, Steven R Erickson
{"title":"Individual and Environmental Factors Associated With Polypsychotropic Medication Regimens Among Adults With Intellectual Disability.","authors":"Kami L Gallus, Jennifer L Jones, Steven R Erickson","doi":"10.1352/1944-7558-130.4.265","DOIUrl":"10.1352/1944-7558-130.4.265","url":null,"abstract":"<p><p>Polypharmacy, the concurrent use of multiple medications, is common among adults with intellectual disability. Psychotropic medications are often implicated in polypharmacy among this population. The current study aimed to determine individual and environmental factors associated with polypsychotropic medication regimens using a population-based sample of adults with intellectual disability who receive Home and Community-Based Services waivers in Oklahoma. The following questions guided the study: a) What is the prevalence of polypsychotropic medication regimens? b) What are the individual and environmental factors significantly associated with polypsychotropic medication regimens? Findings confirmed high prevalence rates of polypsychotropic medication regimens among adult participants and highlighted significant associated individual and environmental factors.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 4","pages":"265-279"},"PeriodicalIF":2.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144499097","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability. 精准医学研究中的团队科学：纳入智障成人的案例。
IF 2.3 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.171
Maya Sabatello, Katherine E McDonald
{"title":"Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.","authors":"Maya Sabatello, Katherine E McDonald","doi":"10.1352/1944-7558-130.3.171","DOIUrl":"10.1352/1944-7558-130.3.171","url":null,"abstract":"<p><p>The inclusion of adults with intellectual disability (ID) in precision medicine research has scientific, public health, and social justice justifications. Yet there is an indication that this population is excluded from general (i.e., nondisability specific) health research, including precision medicine research. Adults with ID are thus unlikely to reap the benefits emerging from such scientific endeavors-today and in the future. In this commentary, we explore key issues in research ethics, including cohort diversity, the principle of justice, and consent, and discuss their ramifications for adults with ID and precision medicine researchers. We call for endorsing team science collaboration and community engagement to promote health equity for adults with ID and disability justice in precision medicine research.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"171-177"},"PeriodicalIF":2.3,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12124407/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
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