Wednesday, February 5, 2025
2/5/2025
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.
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