What, when and by whom? Adolescents’ and parents’ preferences concerning narcolepsy information

Objective: To investigate adolescents’ and parents’ preferences concerning information on narcolepsy. Methods: During a one-year cross-sectional study, adolescents (12–20 years old) with narcolepsy and parents attending the Narcolepsy Center of Bologna (Italy) were invited to fill in a questionnaire including 28 pieces of information regarding narcolepsy, 14 concerning medical issues (i.e., diagnosis, prognosis, treatment, management) and 14 concerning psychosocial issues (i.e., impact on everyday life, relationships, possible support). Participants were asked to indicate: the importance of each item on a 5-point Likert scale; when each piece of information should be provided (diagnostic suspicion, confirmed diagnosis, follow-up visits, upon patient's request); and who should provide it (doctor, nurse, psychologist, parents and/or others). Results: Sixty-two adolescents (37% female, mean age 16.4 years) and 96 parents (58% female, mean age 48.2 years) agreed to participate (100% response rate). Parents rated all items as important (score≥4), while, according to adolescents, 11/14 medical and psychosocial issues were important. The moment of diagnosis was considered the right time to give almost all medical information. Regarding psychosocial issues, mothers mainly indicated the time of diagnosis, while fathers also indicated follow-up visits, and some children opted for follow-up visits or information upon request. The doctor was the preferred provider but when information concerned psychosocial issues, adolescents also indicated the parents, and parents also indicated the psychologist. Conclusions: This study suggests that information on narcolepsy should be comprehensive and tailored, and that parents and psychologists may support the doctor in providing information when narcolepsy is diagnosed during adolescence.