Adapting a group intervention for emotion dysregulation in Prader-Willi syndrome

Summary

Dr. McKinney will assemble PWS families and medical professionals to adapt a group therapy where teens and their caregivers together learn skills to manage stress, emotions, and behaviors unique for PWS families with teenagers.

Lay Abstract

Teenagers with Prader-Willi Syndrome (PWS) often have a hard time managing their emotions. This can lead to problems like irritability, aggression, and other challenging behaviors. These issues can limit the quality of life for both the teen and their family. Left untreated, these behaviors limit access to other services (e.g., extracurriculars, day programs). Research shows that families and patients with PWS both think that finding better ways to manage these behaviors is one of their top priorities. Sadly, there are no behavioral therapies designed specifically to help both people with PWS and their families improve these emotional and behavioral difficulties.

This project will fill that gap by adapting a therapy called Regulating Together (RT) for a new group of teenagers with PWS. Originally developed for autistic children, RT is a group therapy where children and their caregivers learn skills to manage emotions and improve behavior problems. The program has already shown strong results in autistic children. Our team will modify this program to meet the unique needs of teenagers with PWS. Our planned changes include simplified materials, more visual supports, and new content that helps the eating behaviors specific to PWS. We will also restructure the sessions to allow for more hands-on practice between caregivers and teenagers, helping families build skills together.

The project will happen in two phases. First, we will work with a team of experts, including doctors, therapists, family members, and people with PWS, to update the original RT program. Second, we will test the new program, called Regulating Together for PWS (RT-PWS), with two small groups of 4 teenagers and their caregivers. After each group finishes, we will get feedback from families and make more improvements to the therapy curriculum. We will measure how well the program works by looking at changes in emotions, disruptive behaviors, and caregiver stress. We will also measure teenagers’ heart rate patterns, a new, objective way of measuring how well people can calm down their body.

If successful, this project will create a fully developed and manualized therapy program ready to be tested in larger clinical trials. In the short term (2–5 years), we expect to improve emotions and behaviors for participating families and to develop a manualized therapy that will be tested as part of a larger randomized controlled trial. In the long term (5+ years), our goal is to make the therapy widely available by training other clinical providers.

By focusing on emotion regulation, a root cause of many behavioral challenges, this project lays the groundwork for better therapies and clinical care for people with PWS. It directly addresses a top priority identified by families and self-advocates and represents a critical step toward more effective, personalized support for people with PWS.