Perceived challenges in pediatric narcolepsy: a survey of parents, youth, and sleep physicians

To clarify the most common and problematic symptoms, psychosocial challenges, and comorbidities among youth with narcolepsy based on input from key stakeholders. A nationwide cross-sectional survey of youth with narcolepsy, parents, and sleep physicians. Overall, 116 parents, 35 youth, and 30 providers completed the entire survey. Symptoms that were rated as most common and problematic by both parents and youth were (in descending order) as follows: daytime sleepiness, disturbed nighttime sleep, mood challenges, cataplexy, sleep-related hallucinations, and sleep paralysis. Most of the 18 queried psychosocial concerns were identified as substantial challenges by both adults and youth, including difficulty focusing and memory, school, worry and anxiety, diet and nutrition, lack of motivation, mood problems, and relationship problems. In contrast, while physicians did recognize some of these challenges, they rated medication side effects and driver's license issues as relatively greater challenges. These data highlight the high prevalence of psychosocial challenges, discordance between physician and family ratings of challenges, and a high rate of medical comorbidities in youth with narcolepsy and support the application of a biopsychosocial framework in the assessment and treatment of pediatric narcolepsy.