STUDY OBJECTIVES: We aimed to quantify the symptoms of autonomic nervous system (ANS) dysfunction in a large online cohort of patients with IH, and to determine how the severity of these symptoms interacts with sleepiness, fatigue, and quality of life.METHODS: One hundred thirty-eight IH patients and 81 age- and sex-matched controls were recruited through the website of the Hypersomnia Foundation, a U.S.-based patient advocacy group. Twenty-four confirmed IH patients were selected by the study investigators as a comparison group. All participants completed a battery of online sleep, autonomic, and quality of life questionnaires including the composite autonomic symptom score-31 (COMPASS-31).RESULTS: Online and confirmed patients reported significantly higher COMPASS-31 scores (43.6 [33.6-52.7] & 32.9 [21.7- 46.8] vs. 17.6 [11.7-27.9], p<0.001), with the greatest symptom burden in the orthostatic and vasomotor domains. Online and confirmed patients reported more sleepiness (ESS), whereas only online patients reported more fatigue (CFQ). Both the ESS and CFQ positively correlated with COMPASS-31 scores. Patients reported lower quality of life as reflected by lower scores across all domains of the RAND-36, which was negatively correlated with COMPASS-31 scores.CONCLUSIONS: Symptoms of ANS dysfunction are common in IH. In addition, ANS symptom burden was positively correlated with sleepiness and negatively correlated with quality of life.
View details for DOI 10.5664/jcsm.8344
View details for PubMedID 32039754