0769 The Utilization of Social Media to Identify Sleep Problems Associated with PraderWilli Syndrome

Abstract

Introduction: Prader Willi Syndrome (PWS) is associated with the generally accepted symptoms of hyperphagia, obesity, and developmental delay. Caregivers of children with the rare disease lack treatment options; therefore, they frequently engage on social media to learn about the diagnosis, share symptoms, and seek support. While research on sleep and PWS is limited, social listening found issues related to sleep to be the topic of many conversations in the PWS community. We therefore performed a retrospective analysis of caregivers reporting on social media. Method(s): After approval from the administrators of two private Facebook groups, TREND downloaded anonymous conversations from the Living Well group (n = 1261, includes caregivers of individuals of all ages) and the Love Bugs group (n=433, includes children aged 0-2 years). During the time period (2012-2018), there were 24,357 comments in Living Well and 146,458 comments in Love Bugs. We performed an automated analysis of caregiver conversations to quantify sleep problems in PWS, counting the number of times a given term or phrase was mentioned. A subsequent quality assurance was performed to assure the relationship between the terms and sleep. Result(s): : In total, 3,749 sleep-related symptoms were documented. Dominant symptoms were: apnea (133 mentions in Living Well, 1410 mentions in Love Bugs), tiredness (163 mentions in Living Well, 500 mentions in Love Bugs), and drowsiness (112 mentions in Living Well, 503 mentions in Love Bugs). Excessive daytime sleepiness was not commonly mentioned in either group. The Living Well group mentioned narcolepsy (66 times) and cataplexy (110 times) more frequently than in the Love Bugs group (48 times for narcolepsy, 15 times for cataplexy). Conclusion(s): Our retrospective analysis identified a range of sleep problems via social media of a large sample size of PWS including apnea, tiredness, narcolepsy, and cataplexy. The results suggest that the use of social media may enhance/advance our understanding of sleep problems in PWS which may be useful in directing drug development targets and management.