Suicidality in individuals with Prader-Willi syndrome: a review of registry survey data

Abstract

Introduction Prader–Willi syndrome (PWS) is a rare, genetic, neurodevelopmental syndrome associated with hyperphagia and early onset obesity, growth and sex hormone insufficiencies, mild-to-moderate intellectual disability, and behavioral challenges such as compulsivity, anxiety, skin picking, social skills deficits and temper outbursts. Given high rates of psychiatric comorbidity and potential risk factors for suicide in PWS, this study sought a first estimate of the prevalence of suicidal ideation (SI) and attempts (SA) in the PWS population and any characteristics associated with suicidality in this population. Methods Using the Global Prader-Willi Syndrome Registry, we included all participants who had answered a question about SI. We examined the most recent data from the surveys about social, economic, and demographic factors, genetic subtype, and psychiatric symptoms and treatments. A chi-square analysis was used to compare registry participants who reported SI to those without reported SI. Results From 750 included survey respondents, 94 (12.5%) endorsed some history of SI. Of these, 25 (26.6%) also reported a history of SA, with an average age of 16.25 years at their first attempt. Those with a history of SI were predominantly male and adult age, and had higher rates of aggression and psychiatric comorbidities, therapies, and medications. Conclusions This study indicates that the rate of SI and SA in PWS is comparable to the general population, and that suicide attempts in PWS typically begin in middle-teenage years. Despite unique challenges, individuals with PWS and their caregivers should be included in screens and psychoeducation for suicide and mental health concerns.

Factors associated with acute care service use after epilepsy hospitalisation in people with intellectual disability

“…However, intentional self-harm has been under-researched in people with ID (Dodd et al 2016), because of the long-believed assumption that disability may serve as a 'buffer' to the risk. However, recent evidence suggests a comparable suicide risk to the general population (Dodd et al 2016;Peleggi et al 2021). The effect of intentional self-harm on readmission risk observed in people with epilepsy and ID may be explained by many factors, including underlying psychiatric conditions.…”

“… 2016 ; Peleggi et al . 2021 ). The effect of intentional self‐harm on readmission risk observed in people with epilepsy and ID may be explained by many factors, including underlying psychiatric conditions.…”

Development of an International Database for a Rare Genetic Disorder: The MECP2 Duplication Database (MDBase)

“…Similarly, the research goal of the Global PWS Registry was to collect health-related data to better characterise and study the natural history of this disorder [ 28 ]. Research output stemming from the Global PWS Registry on issues such as weight problems, caregiver burden, suicidality, neuropsychiatric features, thrombosis risk and strabismus in PWS has been published, in the form of either retrospective studies from clinical and patient data collected via surveys (the largest of which featured data from 908 individuals) or prospective, observational studies recruiting individuals from the registry [ 30 , 31 , 32 , 33 , 34 , 35 ]. Such research output has been supported by funding from the Foundation for Prader–Willi Research [ 28 ].…”