Building a deeper understanding of social relationship health in adolescents with narcolepsy disorder.

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. 2023;19(3):491-498.