There is increasing evidence that Prader-Willi Syndrome is associated with high rates of psychosis, a serious mental disorder that profoundly disrupts thought and emotion. However, little is known about the early or ‘prodromal’ phase of illness and the risk factors that predict the emergence of psychosis in PWS patients. This is a critical gap in knowledge, given compelling evidence that earlier intervention leads to improved mental health outcomes. We propose to leverage the valuable information in the Global PWS Registry to advance understanding of prodromal features that present prior to the onset of psychotic symptoms in PWS.
To do this we plan to modify the Prodromal Questionnaire-B (PQ-B), a brief screening instrument we have found to reliably predict psychosis risk in behaviorally defined at-risk youth. We will develop a modified PQ-B that most accurately reflects the key symptoms predating psychosis onset in patients with PWS. We will also apply innovative online assessment methods in order to assess multiple domains of cognition (such as learning, memory and processing speed) and social cognition. We will use this information to determine the cognitive profiles that characterize PWS patients most vulnerable to psychosis. This novel web-based approach offers substantial cost savings and efficiency, as no subject travel is required, thus providing an opportunity for families without means to travel to participate in research.
Finally, we will collect saliva samples from study participants for analysis of stress hormones, and biobanking of DNA for future, larger-scale studies.
Our study goals are highly relevant to the mission of FPWR of improving mental health outcomes for patients with PWS. In particular, the proposed work will explore a highly understudied area in PWS, thus leading to more effective monitoring of pre-psychotic symptoms and providing an opportunity for early intervention.