The experience and impact of living with idiopathic hypersomnia: A qualitative study of patient perspectives shared in online media

Abstract

Introduction Understanding the experience and impact of idiopathic hypersomnia (IH) is critical for improving diagnosis, treatment, research, drug development, and policy awareness. Currently, physician and researcher perspectives dominate the discourse on IH, often overlooking the lived experiences of those with the condition. Objective To understand the lived experience of IH from the patient perspective by analyzing spontaneously generated online patient-experience data. Methods Publicly available data were collected through iterative Google searches, manually coded, and thematically analyzed using inductive and deductive approaches to qualitative content analysis. Concept saturation was reached, ensuring comprehensive theme exploration. Results Searches identified 346 social media posts, community forums, blogs, videos, and podcasts created by 123 people with self-identified IH between 2012 and 2022. Most were female, 16–60 years old, and lived in the United States, Australia, Europe, and Canada. Symptom experiences were grouped under 10 themes: prolonged sleep, never feeling fully awake, relentless sleepiness, non-restorative sleep, difficulty in waking, automatic behavior, microsleeps and prolonged naps, cognitive difficulties, limited physical energy, and vivid dreams and hypnogogic hallucinations. Life impacts were identified and grouped under seven domains: psychological and emotional well-being, activities of daily living, injuries, relationships, work and school, physical health, and healthcare and treatment burden. Discussion This study expands the understanding of IH beyond clinician and researcher-driven perspectives and clinical descriptions and illuminates its profound impact on all aspects of life from patients’ point of view. These insights can help clinicians provide better care, drive patient-centered drug development, and raise awareness of this devastating disorder.