Abstract Introduction Sleep disorders are among the possible health challenges people with Prader-Willi Syndrome (PWS) face. Social listening of online PWS discussion reveals patient/caregiver language around sleep issues and can highlight key concerns for intervention in this community. Methods We analyzed 226,333 documents (posts/comments) from Facebook groups devoted to PWS, mostly for caregivers of young children, and 3280 documents from reddit conversations mentioning PWS. A proprietary engine analyzed documents for mentions of clinical concepts and 14 daily living attributes, including sleeping. Documents were lemmatized with spacy, and Term Frequency-Inverse Document Frequency (TF-IDF) was used to find words/phrases associated with subsets of documents. Vector semantics was used to determine phrases semantically similar to “sleepiness” and “narcolepsy”. Results The top sleep conditions were Sleep apnea (428 documents), Obstructive sleep apnea (376), Nightmares (146), Central sleep apnea (103), and Narcolepsy (81). TF-IDF revealed the following lemmatized words/phrases were associated with paragraphs about sleep that didn’t mention a specific disease/symptom: “sleep study”, “nap”, “wake”, “night”, “day”, “sleepy”, “bed”, “fall asleep”, “start gh”, “growth hormone”, “sleep a lot”, “sleep sack”, “sleep through the night”, “pulse ox”. The most similar phrases to “narcolepsy” were “cataplexy”, “symptom”, “history”, “epilepsy”, “linked”, “associated”, and “neurological”. For “sleepiness”, the most similar phrases were “daytime sleepiness”, “fatigue”, “daytime”, “alertness”, “wakefulness”, “excessive”, “significant”, and “muscle tone”. Conclusion This analysis of over 229,000 community posts highlights sleep apnea as the most frequently discussed sleep issue in these online caregiver communities of young children with PWS, with sleep studies for starting growth hormone therapy seeming to drive much of that discussion. Narcolepsy also emerged as a key topic, with related terms like "cataplexy" and "daytime sleepiness" appearing in the discussions, suggesting an awareness of its potential connection to PWS. The use of social listening revealed a rich, nuanced vocabulary around sleep challenges in PWS that may be overlooked by traditional research methods, providing valuable insights into patient and caregiver experiences. By tapping into real-world conversations, social listening offers a unique opportunity to complement clinical data and better understand the lived realities of those affected by PWS, potentially guiding more targeted interventions and improving patient care. Support (if any)
Cline et al. (Fri,) studied this question.
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