ArticleFrontiers in psychology2025
'It's hard to feel this way every single day': patients' perspectives on the emotional burden of narcolepsy.
Article in Frontiers in psychology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and, in the case of narcolepsy type 1, cataplexy. Patients may also experience various sleep disturbances, including hallucinations, sleep paralysis, and vivid dreaming. Beyond its clinical symptoms, narcolepsy impacts aspects of daily life, social functioning, emotional well-being, and overall quality of life. Despite the substantial burden associated with the disorder, qualitative research exploring the emotional burden of individuals with narcolepsy is limited. Methods: A qualitative study was conducted using narrative semi-structured interviews with 25 individuals diagnosed with narcolepsy. The interview framework was validated by a multidisciplinary panel of experts to ensure methodological rigor. Interviews were conducted either in the patients' homes or hospital settings, transcribed verbatim, and then analyzed inductively to develop a comprehensive codebook. A thematic analysis was then performed to identify key patterns and insights into the lived experiences of individuals with narcolepsy. Results: In-depth patient interviews revealed key themes related to the emotional burden of narcolepsy. The onset of symptoms was identified as particularly distressing, evoking feelings of shame, embarrassment, and fear. Symptom manifestation also affected self-perception and important roles in life. Additionally, patients' experiences of daily life, along with their future aspirations and expectations, contributed to a comprehensive understanding of the challenges associated with narcolepsy. Conclusion: The impact of narcolepsy is linked with the emotional experiences and self-perception of patients, influencing their quality of life. This burden may also contribute to potential diagnostic delays and hinder the timely initiation of treatment.
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