REAL-WORLD SYMPTOMS AND IMPACTS OF NARCOLEPSY AND IDIOPATHIC HYPERSOMNIA: QUALITATIVE RESULTS USING SOCIAL MEDIA LISTENING METHODS
Author(s)
Michael J. Doane, MA, PhD1, Danielle Altman, MS2, Kristi Jackson, PhD2, Mitali Soni, PhD2, Nana Y. Asiedu, MPH2, Kristen McCausland, MPH, PhD2;
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA
Presentation Documents
OBJECTIVES: Narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH) are rare, chronic sleep disorders characterized by excessive daytime sleepiness (EDS). Patients also experience other symptoms that may affect daily life. Unlike previous studies evaluating narcolepsy/IH symptoms and impacts that have primarily relied on surveys or interviews, this study used social media listening methods to collect additional real-world data on patients’ experiences.
METHODS: Posts mentioning narcolepsy/IH from 3/2022-2/2025 were collected from publicly accessible US platforms (blogs, advocacy sites, forums, Reddit, Tumblr, X, Facebook, Instagram, YouTube). A subset of posts was sampled for qualitative content analysis from users who self-reported a narcolepsy/IH diagnosis (or cared for a person diagnosed with narcolepsy/IH).
RESULTS: The final qualitative sample included 1,992 posts (from 727 authors) for narcolepsy and 423 posts (from 245 authors) for IH. Most posts were from Reddit (narcolepsy=80%; IH=91%), which hosts online communities where people share information about symptoms, diagnoses, and treatments. Among users with demographic data, most were female (narcolepsy=77%; IH=54%) and younger in age (18-40y: narcolepsy=56%; IH=83%). Among patients with narcolepsy, most described the disease as narcolepsy (60%) versus NT1 (29%) or NT2 (11%), specifically. Common narcolepsy symptoms (>10%) were EDS, fatigue, cognitive impairment, and cataplexy; common IH symptoms included EDS, fatigue, unrefreshing naps, sleep inertia, and cognitive impairment. These symptoms were frequently linked to impacts on daily activities, work/education, relationships, and well-being (e.g., EDS was commonly described as impacting driving and romantic relationships; cataplexy was commonly described in relation to injuries/accidents; cognitive impairment was described as impacting work/education and ability to perform household chores).
CONCLUSIONS: Beyond EDS, fatigue and cognitive impairment were among the most frequently reported symptoms across both narcolepsy/IH, with wide-ranging and unique impacts on daily life. Social media analyses provide a complementary perspective on the lived experiences of individuals living with these rare, burdensome disorders.
METHODS: Posts mentioning narcolepsy/IH from 3/2022-2/2025 were collected from publicly accessible US platforms (blogs, advocacy sites, forums, Reddit, Tumblr, X, Facebook, Instagram, YouTube). A subset of posts was sampled for qualitative content analysis from users who self-reported a narcolepsy/IH diagnosis (or cared for a person diagnosed with narcolepsy/IH).
RESULTS: The final qualitative sample included 1,992 posts (from 727 authors) for narcolepsy and 423 posts (from 245 authors) for IH. Most posts were from Reddit (narcolepsy=80%; IH=91%), which hosts online communities where people share information about symptoms, diagnoses, and treatments. Among users with demographic data, most were female (narcolepsy=77%; IH=54%) and younger in age (18-40y: narcolepsy=56%; IH=83%). Among patients with narcolepsy, most described the disease as narcolepsy (60%) versus NT1 (29%) or NT2 (11%), specifically. Common narcolepsy symptoms (>10%) were EDS, fatigue, cognitive impairment, and cataplexy; common IH symptoms included EDS, fatigue, unrefreshing naps, sleep inertia, and cognitive impairment. These symptoms were frequently linked to impacts on daily activities, work/education, relationships, and well-being (e.g., EDS was commonly described as impacting driving and romantic relationships; cataplexy was commonly described in relation to injuries/accidents; cognitive impairment was described as impacting work/education and ability to perform household chores).
CONCLUSIONS: Beyond EDS, fatigue and cognitive impairment were among the most frequently reported symptoms across both narcolepsy/IH, with wide-ranging and unique impacts on daily life. Social media analyses provide a complementary perspective on the lived experiences of individuals living with these rare, burdensome disorders.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR52
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders