Are There Hidden Adverse Events in Hypoglossal Nerve Stimulation: Comparing Social Media and a Federal Database

Abstract

ObjectiveHypoglossal 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 experiences with HNS therapy, we explored reported events from HNS‐related Facebook groups and the Manufacturer and User Facility Device Experience (MAUDE) database.MethodsA retrospective analysis of HNS‐related Facebook posts from three groups pertaining to HNS therapy, from October 1, 2022 to October 1, 2023, was performed. Posts were analyzed for patient‐reported adverse events. Concurrently, the MAUDE database was reviewed for HNS‐related events during the same timeframe.ResultsFrom 737 Facebook posts, 132 (17.55%) adverse events were identified. Adverse events included pain (34.85%), stimulation discomfort (14.39%), lip weakness (6.82%) and issues related to lead tethering or tight leads around the neck (3.79%). Analysis of the MAUDE database found 428 adverse events, including pain (24.07%), lip weakness (0.44%), and lead tethering (1.64%).ConclusionFacebook group members reported higher rates of lip weakness and lead tethering than recorded in the MAUDE database. 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.Level of EvidenceNA Laryngoscope, 2024