Adapting a Group Intervention for Emotion Dysregulation in Prader-Willi Syndrome
Children's Mercy Hospital Kansas City
Summary
The goal of this study is to help teens with Prader-Willi Syndrome (PWS) and their families learn practical strategies for managing issues like irritability, meltdowns, and anxiety. The main objective of the study is: To adapt current Regulating Together materials to create an outpatient group program for emotion dysregulation in Prader-Willi Syndrome (PWS) that will improve psychosocial outcomes for youth with PWS.
Description
Up to ten children with Prader-Willi Syndrome (PWS) ages 13 to 17.5 years and their caregivers will be enrolled in the study. This study is being done to develop and test a behavior therapy to help teenagers with PWS calm their emotions. Participants will complete assessments at five time points: Screening (T1); Week 0: Baseline visit (T2); Week 5: Post Active Treatment (T3); Week 10: 5 week follow-up (T4); and Week 15: 10 week follow-up (T5). Participants will receive 5 weeks of intervention, twice per week, following the T2 visit.
Eligibility
- Age range
- 13–17 years
- Sex
- All
- Healthy volunteers
- No
Child Participant Inclusion Criteria: * Ages 13-17.5 years * Confirmed genetic diagnosis of Prader-Willi Syndrome * Fluent in spoken English * Adolescent's use of flexible phrase speech or greater * Meeting clinically significant emotional dysregulation criteria * Willing to participate in weekly 90-minute group sessions * Family is willing to keep prescribed psychiatric medication and outside behavioral interventions stable * Parent, guardian, or legally authorized representative must provide written permission on behalf of the participant Child Participant Exclusion Criteria: * Initiation…
Interventions
- BehavioralRegulating Together group therapy
Regulating Together is the original curriculum developed for autistic youth that uses evidence-based therapeutic strategies including relaxation techniques, parent management training, and mindfulness to help regulate emotions. This study will adapt the original Regulating Together curriculum to focus on behavioral interventions to treat emotion dysregulation in Prader-Willi Syndrome.
Location
- Children's MercyKansas City, Missouri