A Novel Intervention for Hyperphagia in Prader-Willi syndrome

Abstract

Prader-Willi Syndrome (PWS) is a rare genetic developmental disability. The syndrome is generally characterized by mild to moderate intellectual disability, various social/cognitive deficits, and behavioral challenges including rigidity, temper outbursts, and hyperphagia—an extremely overactive and insatiable appetite. Much of the current research being conducted today on PWS is focused on addressing the hyperphagia phenotype.

However, there are several gaps in the current literature on the management of hyperphagia in Prader-Willi Syndrome. Firstly, there has still been relatively little success in managing hyperphagia as a behavioral phenotype, and many families must resort to trial and error in managing their child’s extreme food-seeking behaviors. This indicates that this population could benefit from a novel intervention to manage hyperphagic symptoms. Secondly, these interventions should be agency-respecting and therefore individual-centered, not caregiver-centered. Finally, group interventions have produced promising results but have yet to be implemented to manage hyperphagic behaviors.

Individuals with PWS are in dire need of an effective intervention that aims to manage the severity of their hyperphagic behaviors. Through this project, I therefore hope to add to previous research findings regarding the efficacy of group interventions in PWS, with the added dimension of measuring the intervention’s effect on hyperphagia. In other words, this project will provide evidence for the efficacy of an online group intervention on the PWS symptom of hyperphagia. I expect that participants who receive the intervention will show a significant improvement in their hyperphagic behaviors.