Summary: A study published in Sleep Medicine reveals the profound impact of social connections on individuals with narcolepsy and idiopathic hypersomnia (IH). Based on responses from over 1,300 participants across 38 countries, the study highlights significant barriers to social connection, with many patients feeling isolated at the time of diagnosis and beyond. Findings show that knowing someone with the same diagnosis strongly correlates with improved feelings of support and adjustment. The study calls on clinicians to address social isolation by integrating peer support into care models and connecting patients with resources from nonprofit organizations.
Key Takeaways:
- Social Isolation at Diagnosis: Over 91% of participants did not know anyone with the same condition at the time of their diagnosis, and 37.2% remained disconnected years later.
- Connection Improves Adjustment: Knowing someone with the same diagnosis was associated with an 80.7% improvement in feeling supported and adjusting to life with narcolepsy or IH.
- Call for Peer Support Integration: Clinicians are urged to ask about patients’ social connections and integrate peer support programs into care to reduce isolation and improve outcomes.
A study published in Sleep Medicine underscores the profound impact of social connections on individuals living with narcolepsy and idiopathic hypersomnia (IH).
With over 1,300 respondents from 38 countries, this survey reveals that knowing someone with the same diagnosis was significantly associated with feeling supported and adjusting to life with these chronic sleep disorders.
Key findings from the study include:
- Limited Initial Connection: At the time of diagnosis, over 91% of participants did not know anyone with the same condition.
- Barriers to Connection: Even years after diagnosis, 37.2% of respondents still did not know anyone with the same condition at the time of the survey.
- Adjusting to Diagnosis: Only 32.3% of respondents felt supported in adjusting to living with narcolepsy or idiopathic hypersomnia.
- Significant Impact of Connection: 80.7% of respondents reported a positive impact from knowing others with the same diagnosis, which was strongly associated with feeling supported.
- Demographic Insights: Younger individuals (18–30 years) and those who were married reported greater perceived support, while individuals with idiopathic hypersomnia or narcolepsy type 2, and those living outside the United States, reported lower support levels.
Despite their impact, narcolepsy and idiopathic hypersomnia remain underdiagnosed and misunderstood, often leading to stigma and delays in diagnosis and care.
“No one diagnosed with narcolepsy or idiopathic hypersomnia should have to feel alone,” says Julie Flygare, JD, president and CEO of Project Sleep and lead author of the study, in a release. “While extensive research has highlighted the negative effects these conditions have on quality of life, this new research speaks to an underrecognized aspect of patient experience—the social isolation after receiving a diagnosis and the potential power of finding others who share similar experiences.”
Call to Action for Clinicians to Integrate Social Support for Narcolepsy and IH Patients
The study underscores the importance of integrating social support into patient-centered care models and encourages healthcare providers to ask patients, “Do you know someone living with the same condition?” as a way to assess unmet social needs. Clinicians are urged to connect patients with nonprofit organizations that offer resources to foster community and provide education and empowerment for patients and families.
“This is not tomorrow’s care; this is how we must start delivering care today,” says Anne Marie Morse, DO, director of pediatrics neurology at Geisinger Medical Center and a co-author of the study, in a release. “Let this be a call to action to our clinical community that we need to support those who trust us as care partners to help them as individuals, just like us, trying to navigate life toward feeling included and empowered.”
Patient-Driven Collaboration
Led by Project Sleep, a nonprofit raising awareness of sleep health, sleep equity, and sleep disorders, the survey was designed by a multidisciplinary team including a person living with narcolepsy, patient community leaders, clinicians, and researchers. Project Sleep thanked the research team and the individuals who participated in the survey from around the world.
“There is not a class in medical school for clinicians to learn what it is like to live with the isolation and marginalization that people with rare diseases face,” says Morse in a release.
Flygare adds, “We hope researchers will continue to collaborate with patient advocacy organizations to co-develop research and next steps such as peer-to-peer or patient mentorship interventions to reduce isolation and improve outcomes.”
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