Promoting Prosocial Behavior in Syndromic Intellectual and Developmental Disabilities

促进综合症性智力和发育障碍的亲社会行为

• 批准号: 10666356
• 负责人: LATHA Valluripalli SOORYA
• 金额: $ 89.47万
• 依托单位: RUSH UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-07-15 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10666356
• 关键词: Address; Adult; Affect; Age; Angelman Syndrome; Behavior; Behavior Therapy; Behavioral; Blinded; COVID-19 impact; COVID-19 pandemic; Caregiver support; Caregivers; Caring; Child; Child Behavior; Child Rearing; Clinical; Clinical effectiveness; Cognitive; Communication; Communities; Complex; Data; Disparity; Environment; Equipment and supply inventories; Exclusion; Family; Genetic; Goals; Health Services; Health Services Accessibility; Healthcare; Home; Hybrids; Impairment; Individual; Intellectual functioning disability; Intervention; Interview; Life; Longevity; Measures; Medical; Mental Health; Methods; Modeling; Modification; Natural History; Neurobiology; Outcome; Parents; Participant; Patients; Phelan-McDermid syndrome; Phenotype; Population; Provider; Publishing; Questionnaires; Randomized; Randomized, Controlled Trials; Reporting; Research; Resources; Services; Standardization; Subgroup; Surveys; Syndrome; Testing; Tuberous Sclerosis; Vulnerable Populations; Work; applied behavior analysis; behavioral health; behavioral health intervention; behavioral phenotyping; behavioral response; care systems; design; effective intervention; effectiveness evaluation; effectiveness-implementation RCT; effectiveness/implementation study; evidence base; experience; functional disability; health inequalities; implementation science; impression; improved; individuals with autism spectrum disorder; innovation; intervention delivery; minimally verbal; pandemic disease; person centered; programs; psychosocial; reinforced behavior; screening; severe intellectual disability; social; standardize measure; telehealth; treatment as usual; virtual

Project Summary/Abstract: The enormous impact of COVID-19 service disruptions on individuals with intellectual and developmental disabilities (IDDs) has highlighted the critically urgent need to increase access to mental and behavioral health services. Within IDD populations, genetic syndromes associated with IDDs (“syndromic IDDs”) represent a particularly vulnerable subgroup. Many patients with syndromic IDDs present with medically complex phenotypes and remain minimally verbal even into adulthood, creating challenges accessing and benefiting from community-based interventions. Several reports point to extreme behavior and communication challenges as the most pressing behavioral health concerns for this population. Our near-term goals seek to identify effective approaches to target the more severe cognitive and behavioral phenotypes found in syndromic IDDs. Here, we propose adaptations to function-based treatment (FBT) – an already well-established, person- centered applied behavior analysis (ABA) model focused on replacing challenging behaviors with prosocial communication and behavior responses. Using the Planned Adaptation approach, proactive adaptations to improve the fit of FBT with the syndromic IDD population include syndrome-specific characterizations to inform phenotype-environment interactions, systematic screening for automatically reinforced behaviors which are often excluded from published FBT approaches, and adjustments to support minimally verbal individuals. This proposal draws upon the expertise of the investigative group in syndromic IDDs, conventional and telehealth behavioral interventions, and implementation sciences to evaluate the adapted, parent-implemented, telehealth FBT model for syndromic IDDs (FBTsIDD). The goal of this fully remote hybrid type 1 effectiveness- implementation study is to test FBTsIDD as delivered by non-specialist providers housed in medical hubs serving individuals with syndromic IDDs. Aim 1 involves a 24-week randomized control trial (RCT) that will randomize 80 children (ages 2 to 12 years) with syndromic IDDs and moderate to severe intellectual disability (ID) and their caregivers and randomize them into FBTsIDD or positive-parenting treatment (Treatment as Usual, TAU). Our overarching hypothesis is that FBTsIDD will be associated with significant reductions in challenging behaviors compared to TAU on independent evaluator ratings using a consumer-driven, Parent Target Problems (PTP) inventory and standardized measures of behavior and functional communication. Aim 2 seeks to systematically measure and understand both planned and unplanned adaptions to FBTsIDD using the Framework for Reporting Adaptations and Modifications-Expanded (FRAME). Together, these aims provide an innovative model to develop effective, acceptable, and scalable interventions for behavioral and communication challenges across the diverse, vulnerable population of individuals with syndromic IDDs.

项目摘要/摘要： COVID-19的服务中断对具有智力和发展的人的巨大影响 残疾（IDD）强调了迫切需要增加对心理和行为健康的机会 服务。在IDD种群中，与IDD相关的遗传综合征（“综合征IDD”）代表 特别是脆弱的亚组。许多患有医学复杂的综合症患者 表型，甚至在成年后至少言语，造成挑战和受益 来自基于社区的干预措施。几份报告指出了极端的行为和沟通挑战 作为最紧迫的行为健康对这一人群的关注。我们的近期目标试图确定 靶向综合症IDD中发现的更严重的认知和行为表型的有效方法。 在这里，我们提出适应基于功能的治疗（FBT） - 已经建立了良好的人 - 集中的应用行为分析（ABA）模型，重点是用亲社会替换挑战行为 沟通和行为反应。使用计划的适应方法，主动适应 改善FBT与综合征IDD人群的拟合度包括特定于综合征的角色 表型 - 环境相互作用，对自动加强行为的系统筛选 通常被排除在已发表的FBT方法之外，并进行调整以支持最小的口头个体。这 提案借鉴了综合征IDD，常规和远程医疗的调查小组的专业知识 行为干预措施和实施科学，以评估适应的，父母的远程医疗 综合症IDDS（FBTSIDD）的FBT模型。这个完全远程混合1型有效性的目标 - 实施研究是为了测试由医疗枢纽提供的非专家提供者提供的FBTSIDD 患有综合征IDD的人。 AIM 1涉及一项24周的随机对照试验（RCT），该试验将随机化 80名儿童（2至12岁）患有IDDS综合症，中度至严重的智力残疾（ID）和 他们的护理人员并将他们随机分为FBTSIDD或寄生治疗（像往常一样，TAU）。 我们的总体假设是FBTSIDD将与挑战的大幅减少有关 与tau相比，在独立评估评级的情况下，使用消费者驱动的，父母的行为 问题（PTP）库存和行为和功能沟通的标准化度量。 AIM 2寻求 系统地测量和理解计划和计划外的适应FBTSIDD 报告改编和修改扩展的框架（帧）。这些目标在一起提供了 创新模型，以开发有效，可接受和可扩展的行为干预措施 综合症IDD的潜水员，脆弱人群的沟通挑战。