Study objectives: Common symptoms for patients with narcolepsy can have a significant impact on social health. As one peak for symptom onset is adolescence, these symptoms impact social relationships during a critical developmental period. Much of the existing literature in this domain has relied on broad questionnaires, with less insight into the nuances of patients' potential social struggles.
Methods: Adolescents (aged 12-17 years) with narcolepsy and their parents individually completed a semistructured interview (n = 14 dyads). Interview transcripts were analyzed using a multistage thematic analysis.
Results: An overarching theme was the difficulty adolescents experienced trying to balance narcolepsy symptom management with engaging in social activities in a meaningful way. Narcolepsy affected social relationships in 3 primary domains: mood, physical activities, and driving. Adolescents reported that they were frustrated with feeling as though narcolepsy sometimes defined their social lives. Adolescents and parents expressed a desire for medical providers to better understand their evolving priorities, to validate their social limitations, and to provide more information around the social implications of narcolepsy and its treatment.
Conclusions: Narcolepsy has a significant impact on social relationships in adolescents, one that is not adequately managed in current clinical care models. A routine, structured assessment of social health is a vital first step for providers treating adolescents with narcolepsy. Medical centers and patient organizations can play an important role in facilitating social opportunities for this underserved population.
Citation: Zhou ES, Revette A, Heckler GK, Worhach J, Maski K, Owens JA. Building a deeper understanding of social relationship health in adolescents with narcolepsy disorder. J Clin Sleep Med. 2023;19(3):491-498.
Keywords: adolescent; narcolepsy disorder; qualitative interview; social relationship health.
© 2023 American Academy of Sleep Medicine.