ArticlePloS one2025
The experience and impact of living with idiopathic hypersomnia: A qualitative study of patient perspectives shared in online media.
Article in PloS one, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- The impact of narcolepsy and idiopathic hypersomnia on work-related outcomes: a systematic literature review.Sleep advances : a journal of the Sleep Research Society · 2026Review
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionUnderstanding 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.
objectiveTo understand the lived experience of IH from the patient perspective by analyzing spontaneously generated online patient-experience data.
methodsPublicly 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.
resultsSearches 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.
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