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: 10363147
• 负责人: LATHA Valluripalli SOORYA
• 金额: $ 81.34万
• 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/10363147
• 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; Effectiveness; Environment; Equipment and supply inventories; 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; Motor; Natural History; Neurobiology; Outcome; Parents; Participant; Patients; Phelan-McDermid syndrome; Phenotype; Population; Population Genetics; Provider; Publishing; Questionnaires; Randomized; Randomized Controlled Trials; Reporting; Research; Resources; Services; Standardization; Subgroup; Surveys; Syndrome; Testing; Time; Tuberous Sclerosis; Vulnerable Populations; Work; applied behavior analysis; base; behavioral health; behavioral phenotyping; behavioral response; care systems; communication behavior; design; effective intervention; effectiveness implementation study; effectiveness-implementation RCT; evidence base; experience; functional disability; health inequalities; implementation science; impression; improved; individuals with autism spectrum disorder; innovation; intervention delivery; 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： 新冠肺炎服务中断对智力和发展障碍人群的巨大影响 残障人士(IDDS)强调迫切需要增加获得心理和行为健康的机会 服务。在IDD人群中，与IDDS相关的遗传综合征(“综合征IDDS”)代表一种 特别脆弱的亚群。许多综合征性IDDS患者表现出复杂的医学特征 表型，并保持最低限度的言辞，即使到成年，造成了获取和受益的挑战 来自以社区为基础的干预。几份报告指出了极端行为和沟通方面的挑战 作为这一人群最紧迫的行为健康问题。我们的近期目标是确定 针对在综合征性IDDS中发现的更严重的认知和行为表型的有效方法。 在这里，我们建议适应基于功能的治疗(FBT)-一个已经确立的人- 以应用为中心的行为分析(ABA)模型侧重于用亲社会行为取代具有挑战性的行为 沟通和行为反应。使用计划适应方法，积极适应 改善FBT与IDD综合征人群的适合性，包括特定于症状的特征以告知 表型-环境交互作用，系统筛选自动增强的行为 经常被排除在已公布的FBT方法之外，并进行调整以支持言辞最少的个人。这 该提案借鉴了调查小组在综合症IDDS、常规和远程保健方面的专门知识 行为干预和实施科学，以评估适应的、父母实施的远程保健 综合征型IDDS的FBT模型(FBTsIDD)。这种完全远程的混合动力1型有效性的目标是- 实施研究是测试由医疗中心提供服务的非专科医生提供的FBTsIDD 患有综合征性IDDS的个人。AIM 1涉及一项为期24周的随机对照试验(RCT)，该试验将随机 80名患有综合征性IDDS和中重度智力残疾(ID)的儿童(2至12岁)和 并将他们随机分为FBTS、IDD或积极育儿治疗(TAU)。 我们的主要假设是FBTsIDD将与挑战的显著减少相关 使用消费者驱动的家长目标对独立评估者评级的行为与TAU进行比较 问题(PTP)清单以及行为和功能沟通的标准化测量。目标2寻求 系统地测量和了解计划内和计划外对FBTsIDD的适应 报告改编和修改的框架--扩展(框架)。这些目标加在一起提供了一个 创新模式，开发有效、可接受且可扩展的行为和 在不同的、易受伤害的IDDS综合征患者群体中面临沟通挑战。