Advancing Patient-Centered Care: An International Survey of Adolescent Perspectives on Insomnia

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.

Acknowledgments

The authors acknowledge Daniel Lewin and Melissa Xanthopoulos for contributions to conceptualization and survey development. Qualitative data was coded by research coordinators Yakaren Aguilera and Shajna Khan. Study data were collected and managed using REDCap electronic data capture tools hosted at Indiana University. This project was conceptualized at the Sleep2 conference; the authors are grateful members of the PCORI Working Group/Sleep2 Organizing Committee Meeting, led by Sai Parthasarathy. We are particularly grateful to the more than 3,000 adolescents with insomnia who volunteered their time and shared their perspectives.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Abbreviations

ADHD	=	Attention Deficit and Hyperactivity Disorders
CI	=	Confidence interval
ID	=	Identification
SD	=	Standard Deviation
US	=	United States
UK	=	United Kingdom

Additional information

Funding

Dr. Honaker’s time was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number K23HL150299. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.