Regulating Together in Tuberous Sclerosis Complex: A Pilot Feasibility Study in Children and Adolescents with TSC-Associated Neuropsychiatric Disorder (TAND)
Abstract
Scientific Objective and Rationale: Approximately 90% of individuals with Tuberous Sclerosis Complex (TSC) are affected by difficulties in behavioral, psychiatric, intellectual, academic, neuropsychological, and psychosocial areas, collectively termed TSC-Associated Neuropsychiatric Disorder (TAND). Individuals with TSC exhibit higher rates of TAND-associated behavioral challenges throughout life compared to the general population, which results in significant caregiver burden and for which there are no specific treatments. Emotion dysregulation (ED), defined as a general deficit in one’s ability to modulate the intensity or duration of emotional responses in an adaptable and contextually appropriate manner, is commonly associated with multiple psychiatric disorders and maladaptive behaviors seen in TSC. A treatment for ED has been developed called Regulating Together (RT), which is an evidence-based group treatment program, targeting both children and their caregivers, designed to improve ED regardless of underlying etiology and is effective, feasible, and accepted in children with features and behaviors similar to TAND. Our overall objective is to understand ED in children and adolescents with TSC and TAND-associated challenging behaviors. We first aim to characterize ED in children and adolescents with TSC and TAND. Our second aim is to pilot RT delivered remotely to school-aged children with TSC and TAND to determine if ED-specific behaviors improve after a 5-week group treatment intervention, followed by a 10-week period consisting of utilizing skills at home. Lastly, we aim to understand facilitators and obstacles to RT feasibility and implementation through caregiver interviews. Project Impact: Short-term positive benefits for the participants and caregivers participating in the research groups include providing behavioral treatment for challenging behaviors in an easily accessible manner. Long-term benefits include using what we learn from the pilot study to inform larger treatment trials, which will facilitate future adoption and incorporation of RT into clinical practice for children with TSC and TAND and their caregivers. Fiscal Year 2022 (FY22) Tuberous Sclerosis Complex Research Program (TSCRP) Clinical Translational Research Award Focus Area: The proposed research proposal aligns closely with FY22 TSCRP Clinical Translational Research Award Focus Area for understanding and treating the features of TAND and reducing their impact, including pharmacological, behavioral, and surgical interventions.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Jan 04, 2024
- Source ID
- HT94252310344
Entities
People
- Jamie Capal
Organizations
- United States Army
- University of North Carolina at Chapel Hill