Background/Objectives: Narcolepsy is a chronic neurologic disorder associated with substantial challenges that affect the social, emotional, and financial quality-of-life domains. A social listening analysis and structured survey were conducted to better understand the candid perspective of people with narcolepsy (PWN) and their experience with twice-nightly sodium oxybate (SXB). Methods: To characterize conversations and experiences in narcolepsy communities where SXB was mentioned, a social media analysis was conducted from August 2011 to October 2022. A structured survey was administered to PWN taking oxybate therapy from October 2022 to November 2022. Results: From the social media analysis, the largest topic was related to “cataplexy”, with 537 posts/comments. The most frequent term was “xyrem”, with 22,200 mentions. Of the 87 survey respondents, 85 respondents had narcolepsy, 75.3% (64/85) reported missing their second dose of immediate-release SXB or mixed-salt oxybates, and 58.8% (50/85) of respondents reported that they took their second dose of oxybate > 4 h after the first dose. Respondents reported poor sleep quality as the greatest effect or issue experienced after missing their second oxybate dose. When respondents were asked whether they had ever been injured after waking to take their second oxybate dose, 31.8% (27/85) of respondents reported an injury. Conclusions: PWN taking twice-nightly oxybates often report inconsistent adherence to the prescribed dosing, which results in negative consequences in their lives. This research provided an anonymized forum for PWN to voice challenges with middle-of-the-night awakenings that they may be reluctant to explain to their clinician.

Background/Objectives: Sjögren’s disease (SjD) flares are incompletely understood. The patient perspective is critical to closing this gap. This retrospective social media listening (SML) study characterized the flare lexicon within the online Reddit SjD community using novel machine learning and natural language processing. Methods: Documents (posts/comments) were analyzed from the subreddit group “r/Sjogrens” (October 2012 to August 2023). Outcomes were as follows: (1) Frequency of documents mentioning flare, and contexts in which flare was mentioned; (2) clinical concepts associated with flare (analyzed using co-occurrence and pointwise mutual information [PMI]); (3) proportion of flare vs. non-flare documents relevant to SYMPTOMS or TESTING (compared using a two-proportion z-test); and (4) primary emotions mentioned in flare documents. Results: Of 59,266 documents with 5025 authors, flare was mentioned 3330 times (4.4% of documents from 19.1% of authors). Flare was discussed as a symptom (1423 instances), disease (13), or with no clinical category (1890). Flare-associated clinical concepts (co-occurrence > 100 and PMI² > 3) included SYMPTOMS (pain, fatigue, dryness of eye, xerostomia, arthralgia, stress) and BODY PARTS (eye, mouth, joints, whole body). More flare vs. non-flare documents mentioned a SYMPTOM, whereas fewer mentioned a TEST (p < 0.001 for both). Within flare documents, 36.5% expressed emotions, primarily fear (40.5% of primary emotions), happiness (17.8%), sadness (15.7%), and anger (15.5%). Conclusions: The SjD community discusses flare frequently and in context with symptoms, specifically pain, eye and mouth dryness, and fatigue. Flare conversations frequently involve negative emotions. Additional research is required to clarify the patient experience of flare, its clinical parameters, and implications.