Autism Spectrum and Developmental Disorders
Allison Wainer, Ph.D.
Associate Professor
Rush University Medical Center
Chicago, Illinois, United States
Taylor P. Dorlack, Ph.D.
Postdoctoral Psychology Fellow
Rush University Medical Center
Chicago, Illinois, United States
Alexandra Lopez Hernandez, B.A.
Clinical Research Coordinator
Rush University Medical Center
Chicago, Illinois, United States
Madison Nava, B.S.
Research Operations Manager
Rush University Medical Center
Bartlett, Illinois, United States
Latha Valluripalli Soorya, Ph.D.
Associate Professor
Rush University Medical Center
Chicago, Illinois, United States
As evidence-based interventions are replicated and transported from research to clinical settings, modifications to the interventions are inevitable. While reactive and unintentional adaptations (often the result of error) are associated with poorer intervention outcomes, planned and proactive adaptations that are identified through deliberate processes, grounded within a framework, and consistent with core intervention philosophy and elements can promote intervention fit, acceptability, and effectiveness. The systematic study of proactive adaptations to evidence-based interventions may be a powerful mechanism for bolstering key clinical and implementation outcomes and reducing inequities. Addressing disparities in care is acutely relevant for the intellectual and developmental disabilities (IDD) population where individuals are at increased risk for health inequities and challenges accessing key healthcare services, including behavioral health supports. This is especially true for individuals with genetic syndromes associated with IDDs (SIDDs) who represent a particularly vulnerable subgroup. The goal of this research was to identify and report on systematic adaptations made to Function-based treatment (FBT), a well-established challenging behavior intervention, to improve the fit of this intervention with the SIDD population. Members of the SIDD community, clinical experts, and the research team partnered together to engage in Planned Adaptation, a framework that guides systematic adaptation through the following steps: (1) examining theory of change, (2) identifying population differences, (3) adapting program content, and (4) adapting evaluation strategy. The Framework for Reporting Adaptations and Modifications-Enhanced (FRAME) was used to categorize the nature, rationale for, and goals of the resulting adaptations. Results indicate that modifications were made either to intervention content (n =13) or the training approach (n = 4). The main reason for modifications was to make FBT more amendable to a parent training model for parents of children with SIDDs, followed by telehealth, characteristics of the SIDDs themselves, and then engagement of non-specialized clinicians. The most frequently coded goals of adaptation were to improve the effectiveness and fit of FBT with the SIDD population. The adapted FBT intervention will next be evaluated within the context of a randomized control trial (RCT) seeking to test this as an approach for improving communication and behavior in the SIDD population. This research serves as a model for rigorous intervention adaptation and reporting with the goal of enhancing transparency, replication, and comparability as the science of intervention adaptation advances.