Introduction: Narcolepsy, characterized by excessive daytime sleepiness, is a debilitating lifelong sleep disorder for which there is no cure. Current pharmacological and nonpharmacological treatments directed toward symptom management may be suboptimal. This qualitative study explores the perspective of adolescents on therapeutic interventions for narcolepsy.
Methods: Semi-structured interviews with adolescents with narcolepsy were conducted from May to August 2019 at The Hospital for Sick Children in Toronto, Canada. Qualitative thematic analysis was utilized to generate themes emerging from the data.
Results: Eighteen adolescents with narcolepsy (age range = 10-17, mean age = 14.4 ± 2.0 years, 72% male) participated and 56% had cataplexy. Four prominent themes arose regarding therapeutic interventions for narcolepsy. Firstly, participants described that pharmacotherapy was moderately effective but did not fully relieve symptoms associated with narcolepsy. Secondly, while medications are the first line treatment for narcolepsy, many participants reported frustration regarding medication dependence and side effects. Thirdly, nonpharmacological strategies including scheduled sleep times and exercise were accepted and often employed. Lastly, adolescents desired more psychosocial support to address mental health sequelae of narcolepsy that were not fully managed by current treatment modalities.
Conclusions: Medications were perceived as moderately effective for managing narcolepsy but almost all participants expressed concerns with taking medications due to side effects. Adolescents valued the importance of more holistic care for their narcolepsy treatment such as psychosocial support and nonpharmacological modalities. Further anticipatory guidance regarding pharmacological side effect profiles and better integration with nonpharmacological modalities are needed to improve disease control in adolescent patients.