Evaluating the Feasibility of a Play-Based Telehealth Intervention Program for Children with Prader-Willi Syndrome

Area of Science:

• Developmental Pediatrics
• Rare Genetic Disorders
• Telehealth Interventions

Background:

• Children with Prader-Willi syndrome (PWS) exhibit social-cognitive challenges, similar to those with Autism Spectrum Disorder (ASD).
• Developing effective behavioral interventions for PWS is hindered by the need for frequent in-person visits and challenges in participant recruitment for local studies.
• Telehealth offers a potential solution to overcome logistical barriers in delivering interventions for rare developmental disorders.

Purpose of the Study:

• To assess the feasibility and acceptability of a telehealth-delivered, play-based intervention for children with Prader-Willi syndrome.
• To evaluate the direct delivery of behavioral interventions via telehealth for a rare genetic disorder.

Main Methods:

• A 6-week play-based intervention was delivered directly to eight children with PWS (ages 6-12) using telehealth.
• Participant adherence and technological/behavioral difficulties were monitored throughout the intervention.
• The Behavioral Intervention Rating Scale (BIRS) was used to assess intervention acceptability.

Main Results:

• The telehealth intervention was completed by participants with minimal behavioral or technological challenges (average 11.875 out of 12 sessions).
• Results from the BIRS indicated high acceptability of the telehealth intervention (average score of 5.54 out of 6.00).

Conclusions:

• Telehealth is a feasible and acceptable modality for delivering direct behavioral interventions to children with Prader-Willi syndrome.
• These findings support the use of telehealth for rare disorders and for providing direct intervention to children with developmental delays.
• Telehealth can overcome recruitment and logistical challenges associated with in-person interventions for rare pediatric conditions.