Survey Highlights Patients’ Need for Support in Adapting to Life in Narcolepsy or Idiopathic Hypersomnia

Julie Flygare, JD

(Credit: Project Sleep)

A recently published international survey reported that a small portion of patients with narcolepsy or idiopathic hypersomnia felt supported when adjusting to life with their condition. Published in Sleep Medicine, the results of the survey highlighted the need for clinicians to assess social support and guide patients living with these sleep disorders toward resources that can foster community connections.¹

The online survey, conducted by Project Sleep², gathered responses from 1308 adults with narcolepsy type 1 (48.4%), narcolepsy type 2 (28.7%), or idiopathic hypersomnia (22.9%). Participants were predominantly women (87.7%), White (88.8%), and under 40 years of age (68.7%). Participants represented 38 countries, with the majority (65.5%) residing in the United States, followed by 15.4% in Europe and 11.8% in Australia/New Zealand.

Adjusting to life with a diagnosis was challenging for the majority of respondents, with 67.6% rating the process as difficult or very difficult. Individuals with idiopathic hypersomnia reported greater difficulty compared with those with narcolepsy. Overall, only 32.3% of respondents felt supported in adapting to life with their condition.

“For many people, it took several years to have a meaningful connection with someone who shared the same diagnosis. At the time of the survey, one-third of respondents still did not know anyone else with their same condition,” lead author Julie Flygare, JD, president and CEO at Project Sleep, and colleagues noted.¹ “This finding is striking because it illustrates that people are not connected with others who have the same conditions, despite existing resources to support these connections. We believe this is, in part, due to underrecognition in clinical practice of patients’ social experiences and unmet needs.”

Led by senior author sleep disorder expert Anne Marie Morse, DO, FAASM, director of Child Neurology and Pediatric Sleep Medicine at Geisinger Janet Weis Children's Hospital, the online survey was conducted between March 28 and April 11, 2021. The survey, composed of 30 questions, asked respondents about their diagnosis, time from symptom onset to diagnosis, ease or difficulty in adjusting to their diagnosis, whether or not they knew someone with the same diagnosis, the impact of knowing another person with the same diagnosis, methods of communicating with other people with their diagnosis and topics discussed, and sources of support.

Delays in diagnosis were frequently reported, with over one-third of respondents indicating it took 10 years or more after symptom onset to receive a diagnosis, and only one-quarter were diagnosed in 3 years. Diagnostic timelines varied by condition, for example, individuals with narcolepsy type 1 were more likely to be diagnosed in 3 years (29.2%) compared with those with narcolepsy type 2 (17.9%) or idiopathic hypersomnia (17.7%). Conversely, a higher proportion of respondents with idiopathic hypersomnia (44.7%) experienced delays of 10 years or more, compared with those with narcolepsy type 2 (38.9%) and narcolepsy type 1 (35.2%).

Anne Marie Morse, DO, FAASM

(Credit: Society for Womens Health Research)

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At the time of diagnosis, most respondents (91.1 %) did not know anyone else with the same condition. This was reported by nearly all individuals with idiopathic hypersomnia (96.0%), as well as 88.8% of those with narcolepsy type 1 and 91.2% of those with narcolepsy type 2. These rates were consistent across geographic regions, with 91.0% of U.S. respondents and 91.2% of respondents from other countries reporting similar experiences. Rates were also comparable across age groups: 89.8% for ages 18–30, 92.1% for ages 31–50, and 91.3% for those over 50.

Regression analysis revealed that knowing someone with the same diagnosis was strongly associated with a greater sense of support. Younger respondents (ages 18–30) and those who were married also reported higher levels of perceived support. However, individuals with narcolepsy type 2 or idiopathic hypersomnia reported feeling less supported than those with narcolepsy type 1. Living outside the U.S. was another factor linked to lower perceived support. Additionally, respondents who identified as nonbinary, transgender, or genderfluid tended to feel less supported compared with those who identified as women (P = .08).

The current study had several limitations including that diagnoses were self-reported and not verified through medical records. Additionally, the survey did not collect data on symptoms or their severity, making it impossible to analyze the relationship between social support and symptomatology. Conducted in 2021 during the COVID-19 pandemic, the survey’s findings may have been influenced by the unique social dynamics of that time, though the extent of this impact is unclear. While duplicate submissions were removed, there remains a small chance that some individuals submitted multiple responses with variations. However, this risk was deemed minimal and acceptable by researchers to preserve participant anonymity.

“Health care providers can assist their patients with narcolepsy or idiopathic hypersomnia in finding resources that provide support and facilitate adjustment to their diagnosis. We recommend health care providers ask patients, ‘Do you know someone living with the same condition?’ as a first step toward assessing unmet social needs and opportunities for connection,” Flygare et al noted.¹ “While health care providers may be hesitant to facilitate introductions between their patients due to privacy considerations, connecting patients with nonprofit patient advocacy organizations protects privacy concerns and allows patients to access a variety of resources and support services.”

REFERENCES
1. Flygare J, Oglesby L, Parthasarathy S, et al. Social support and isolation in narcolepsy and idiopathic hypersomnia: An international survey. Sleep Med. 2025;125:65-73. doi:10.1016/j.sleep.2024.11.013
2. Project Sleep. Homepage. Accessed January 23, 2024. https://project-sleep.com/