Abstract
OBJECTIVE: The study objective was to inform patient-centered care for adolescent insomnia by describing adolescents' perspectives on insomnia. Specific constructs of interest included: 1) factors that contributed to insomnia development or maintenance, 2) impact of insomnia on day-to-day life, 3) recommended research priorities, and 4) overall experience living with insomnia. METHOD: A convenience sample of adolescents (ages 13-18 years) self-identifying with insomnia symptoms was recruited through social media. Respondents (n = 3,014) completed an online survey. Responses to an open-ended item assessing patient experience were coded using thematic analysis. RESULTS: Participants identified as 70.8% White non-Hispanic, 77.0% female, and lived in one of five English-speaking countries (United States, United Kingdom, Canada, Australia, or New Zealand). Most (87.5%) met DSM-V diagnostic criteria for insomnia. The most common contributory factors to insomnia endorsed were stress (72.1%) and depressed mood (63.6%), while common impact areas were mood (72.2%), focus (61.0%), and pain (49.7%). Patient-centered research priorities were identifying insomnia causes (66.4%) and early detection (66.1%). Common adolescent experiences included high distress levels, feelings of invalidation, and helplessness about their insomnia. CONCLUSIONS: Adolescents with insomnia offer a unique perspective that should inform patient-centered research and care. There is a need for heightened screening and awareness about insomnia as a condition that causes significant distress and impairment for adolescents. To provide validating care, providers should recognize the multifaceted causes of insomnia.