Addressing the gaps: What social media tells us about patient experiences with hypoglossal nerve stimulation

Hypoglossal nerve stimulation (HNS) can be an effective treatment for moderate to severe obstructive sleep apnea (OSA) in positive airway pressure (PAP) intolerant patients. To better understand patient perceptions of HNS therapy, we explored three Facebook groups pertaining to HNS therapy. A retrospective analysis of Facebook posts from three HNS-related Facebook groups, from October 1, 2022 to October 1, 2023, was performed. Posts were analyzed for author attitude, content (adverse events, inquiries, or sharing information), and the inclusion of media within the post. From 737 Facebook posts, 752 events were identified, predominantly authored by patients or family (99.5 %). Few posts included media attachments (7.3 %), primarily photos (85.5 %). Post tone was mainly neutral (79.4 %), rather than positive (12.9 %) or negative (7.7 %). Most posts (53.6 %) were queries to the Facebook group, as opposed to sharing information (28.9 %) or detailing adverse events (17.6 %). Notably queries posed by Facebook group members included those pertaining to the postoperative recovery course (10.17 %), physical activity restrictions (6.20 %), HNS therapy eligibility (4.71 %), financial considerations (4.22 %), and more. Overall, Facebook group members reported a predominantly neutral tone, typically posting queries to the group rather than sharing information or detailing adverse events. These findings illustrate how diverse data sources, such as social media, can enhance our understanding of patient experiences and identify gaps in patient education with HNS therapy.