Living with narcolepsy during adolescence: A qualitative study

RATIONALE: Narcolepsy is a chronic sleep disorder, with typical onset in childhood or adolescence. Features of narcolepsy include excessive daytime sleepiness (EDS), cataplexy, sleep paralysis, hallucinations and disturbed nocturnal sleep. The constellation of symptoms may be challenging for patients to manage. Adolescents with narcolepsy report poor quality of life and mental health concerns. OBJECTIVE: The objective of this report was to understand the experience of living with narcolepsy as an adolescent and its impact on daily functioning, relationships and mental health. METHODS: In-depth, semistructured interviews with adolescents with narcolepsy were conducted from May to August 2019 at the Hospital for Sick Children in Toronto, Canada. Interview questions focused on perceptions of 1) disease symptoms, 2) mental health, 3) daily functioning, 4) relationships and 5) coping. Interviews were digitally audio-recorded for verbatim transcription, coded by two researchers and analyzed using NVivo qualitative data computer software. RESULTS: Eighteen adolescents with narcolepsy (age range = 10-17, mean age = 14.4 +/- 2.0, 72.2% male) participated. The findings suggest some of the common symptoms of narcolepsy (eg, EDS) are often experienced as unpleasant, while vivid dreaming may be pleasant. Emotional challenges such as frustration with symptoms and worries about the future are common. Participants emphasize the importance of ongoing support from others (eg, clinical team, teachers) to help with coping with chronic illness. CONCLUSION: Living with narcolepsy poses unique challenges for adolescents and impacts their psychosocial health. We recommend increased psychosocial support from mental health professionals, educational resources for schools and teachers, and peer support groups for adolescent narcolepsy patients.