Social support and isolation in narcolepsy and idiopathic hypersomnia: An international survey

Julie Flygare; Lauren Oglesby; Sairam Parthasarathy; Michael J Thorpy; Emmanuel Mignot; Eileen B Leary; Anne Marie Morse

doi:10.1016/j.sleep.2024.11.013

Social support and isolation in narcolepsy and idiopathic hypersomnia: An international survey

Sleep Med. 2024 Nov 12:125:65-73. doi: 10.1016/j.sleep.2024.11.013. Online ahead of print.

Authors

Julie Flygare¹, Lauren Oglesby², Sairam Parthasarathy³, Michael J Thorpy⁴, Emmanuel Mignot⁵, Eileen B Leary⁶, Anne Marie Morse⁷

Affiliations

¹ Project Sleep, Los Angeles, CA, USA. Electronic address: info@project-sleep.com.
² Project Sleep, Los Angeles, CA, USA.
³ University of Arizona Health Sciences, Center for Sleep, Circadian, and Neuroscience Research, University of Arizona, Tucson, AZ, USA.
⁴ Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.
⁵ Stanford Center for Narcolepsy, Stanford University, Palo Alto, CA, USA.
⁶ Independent Researcher, San Francisco, CA, USA.
⁷ Department of Child Neurology and Department of Sleep Medicine, Geisinger Commonwealth School of Medicine, Geisinger Medical Center, Janet Weis Children's Hospital, Danville, PA, USA.

PMID: 39561673
DOI: 10.1016/j.sleep.2024.11.013

Abstract

Objective: To evaluate factors associated with feeling supported in adjusting to life when diagnosed with narcolepsy or idiopathic hypersomnia.

Methods: An online survey was disseminated by nonprofit organization Project Sleep via email and social networks. Intended recipients were adults (≥18 years old) diagnosed with narcolepsy or idiopathic hypersomnia. Multivariable regression was used to assess predictors of feeling supported in adjusting to life with these conditions.

Results: The survey was completed by 1308 individuals (narcolepsy type 1, 48.4 %; narcolepsy type 2, 28.7 %; idiopathic hypersomnia, 22.9 %). Overall, 68.7 % of respondents were ≤40 years of age; 87.7 % were female; and 88.8 % were White. Respondents lived in 38 different countries (65.5 % in the United States). At time of diagnosis, most (91.1 %) did not know anyone with the same diagnosis. At time of the survey, 486 respondents (37.2 %) still did not know anyone with their diagnosis. Only 32.3 % of respondents felt supported in adjusting to life with narcolepsy or idiopathic hypersomnia. Knowing someone with the same diagnosis at the time of the survey was a significant predictor of perceived support. Younger age (18-30 years) and being married were also associated with greater perceived support, whereas a diagnosis of narcolepsy type 2 or idiopathic hypersomnia (versus narcolepsy type 1) and living outside the US were associated with less perceived support.

Conclusions: People with narcolepsy or idiopathic hypersomnia often do not know others living with the same condition, even though this is associated with feeling supported. Clinicians should assess for social support and assist with resource identification.

Keywords: Idiopathic hypersomnia; Narcolepsy; Patient perspective; Project Sleep; Survey.