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 服务中断对智力和发育障碍人士的巨大影响 残疾（IDD）凸显了增加获得心理和行为健康的机会的迫切需要 在 IDD 人群中，与 IDD 相关的遗传综合征（“综合征 IDD”）代表了一种 许多患有 IDD 综合征的患者表现出复杂的医学症状。 即使到了成年期，仍保持最低限度的言语表达型，这给获取和受益带来了挑战 一些报告指出了极端的行为和沟通挑战。 我们的近期目标是确定这一人群最紧迫的行为健康问题。 针对 IDD 综合征中更严重的认知和行为表型的有效方法。 在这里，我们建议对基于功能的治疗（FBT）进行调整——这是一种已经很成熟的、基于个人的治疗方法。 以应用行为分析（ABA）模型为中心，专注于用亲社会取代挑战性行为 使用计划适应方法，主动适应 提高 FBT 与 IDD 综合征人群的契合度，包括综合征特异性特征，以提供信息 表型-环境相互作用，系统筛选自动强化的行为 通常被排除在已发布的 FBT 方法和支持最低限度语言个体的调整之外。 该提案借鉴了研究小组在 IDD 综合症、传统和远程医疗方面的专业知识 行为干预和科学来评估适应性的、家长实施的远程医疗 IDD 综合征的 FBT 模型 (FBTsIDD) 这种完全远程混合 1 型有效性的目标 - 实施研究的目的是测试由医疗中心内的非专业提供者提供的 FBTsIDD 服务 目标 1 涉及一项为期 24 周的随机对照试验 (RCT)，该试验将随机分组。 80 名患有 IDD 综合征和中度至重度智力障碍 (ID) 的儿童（年龄 2 至 12 岁） 并将他们随机分配到 FBTsIDD 或积极育儿治疗（如常治疗，TAU）中。 我们的首要假设是，FBTsIDD 将与挑战的显着减少相关。 使用消费者驱动的父目标与 TAU 进行独立评估者评级的行为比较 目标 2 寻求问题 (PTP) 清单以及行为和功能沟通的标准化测量。 使用以下方法系统地衡量和了解对 FBTsIDD 的计划内和计划外的适应 这些目标共同提供了一个报告改编和修改的框架（FRAME）。 创新模型来开发有效的、可接受的和可扩展的行为和干预措施 IDD 综合征患者的多样化、弱势群体面临沟通挑战。