A Conceptual Disease Model of the Symptoms and Impacts of Idiopathic Hypersomnia From the Patient Perspective
Introduction: Research exploring patients’ experiences with idiopathic hypersomnia is limited. This qualitative study explored patients’ perspectives on the most relevant and important symptoms and impacts of idiopathic hypersomnia.
Methods: Twenty adult participants completed concept elicitation interviews discussing their experience with idiopathic hypersomnia. Interviews included open-ended questions and probes on topics informed by a targeted literature review. Participants rated bothersomeness (0–10) for current symptoms and impacts, and severity (0–10) for all past/current symptoms. Participants reported their 3 worst and most bothersome symptoms. Concept frequencies and bothersome ratings were used to evaluate salience (ie, reported by ≥50% of participants and average bothersome rating ≥5) and to develop a conceptual disease model.
Results: Participants reported 31 symptoms and 37 impacts; 10 symptoms and 15 impacts were deemed salient. Most frequently reported symptoms included chronic daytime sleepiness (n=20, 100%), napping/excessive napping (n=19, 95%), brain fog (n=17, 85%), difficulty concentrating/focusing (n=17, 85%), and sleep inertia (n=17, 85%). Chronic daytime sleepiness and brain fog were commonly reported among the 3 worst symptoms. Most common symptoms reported among the 3 most bothersome were chronic daytime sleepiness, difficulty concentrating/focusing, fatigue, and sleep inertia. Impacts affected participants’ activities of daily living, behavioral/emotional well-being, and physical functioning, including difficulties with work (n=20, 100%) and driving (n=18, 90%).
Conclusion: Interviews provided insights into how patients describe and experience idiopathic hypersomnia symptoms beyond chronic daytime sleepiness, including cognitive symptoms and sleep inertia. Findings may inform recognition and management of idiopathic hypersomnia, aiding in the differentiation from conditions with overlapping symptoms.
