Presentation (CTI)

OBJECTIVES: Health research on rare diseases such as Prader-Willi Syndrome (PWS) is difficult due to low prevalence and geographical dispersion. Individuals with PWS and caregivers may use social media to share experiences and seek information. With this study, we aim to use the social listening method using posts to examine the discussions surrounding PWS and understand the trends from multiple perspectives on the X platform.
METHODS: Publicly available posts (n=2857) sent between October and December 2024 that matched keywords related to PWS were retrieved. Extracted posts were classified according to tweet type, user description, genre, audience, and theme. A random sample of 200 posts was analyzed to develop a coding framework and then applied to holdout data. A quantitative content analysis was conducted to identify patterns and themes.
RESULTS: Out of the total n=2857 posts for PWS, a quarter (25.8%) were promotional, covering topics related to fundraising (11%), PWS conferences (12.2%), and awareness (2.6%). Most posts were posted by PWS organizations (57.9%) and directed towards the scientific community (96%) and caregivers (2%). Categorized discussions highlighted information on ongoing and upcoming treatments (3.1%), caregiving in PWS (3.5%), clinical trials (3%), and disease challenges (2.1%). Posts for treatment advancements (3.1%) featured therapies for hypogonadism, hyperphagia, hypothalamic obesity, and disruptive behaviors, mentioning key treatments like DCCR, Tesomet, Vagus Nerve Stimulation, and bright light therapy. Pharmaceutical companies and researchers occasionally used X to recruit patients for clinical trials (TEMPO and DCCR trial), and the use of PWS registry for research (2%). Caregivers posted on their experiences, availability resources, and the lack of access to growth hormone treatments.
CONCLUSIONS: Given the rarity of PWS and the limited clinical or patient information available, analyzing social media discussions highlighted key areas of interest, underrepresented topics, and opportunities for targeted outreach or further research.