What is it like to live with narcolepsy? A scoping review.

Abstract

Background: Narcolepsy impacts quality of life (QoL) with its symptomatology in hobbies and everyday activities, work and productivity and has social and economic consequences. The aim of this review is to map and synthesize evidence about QoL in narcolepsy patients and to focus on research strategies and publications in the matter.

Methods: A scoping review of articles published between 2014-2025. The initial search of WoS resulted in 7748 articles and 2583 in PubMed being screened for eligibility. Intervention, comorbidity, non-narcolepsy, prevalence and medical trials studies were excluded. We extracted data on bibliometric characteristics, research questions, sample and recruitment method, design, concepts and measures, and the main findings. Two independent reviewers did the screening and analyses. The analyzed data were consulted on with stakeholders to settle gaps, possibilities and directions for future research. This study followed the PRISMA-ScR guidelines.

Results: Twenty papers were included in this study. There is an increasing trend in publishing studies focused on QoL in narcolepsy patients, but its spread is very limited across various audiences. Most of the studies assess the association of narcolepsy symptoms, treatment, mental health or nutritional status and QoL in narcolepsy patients. Most used was a questionnaire-based cross-sectional design comparing a control group vs narcolepsy patients recruited through regular follow up at a sleep clinic or national reference centers or patients' organization.

Conclusion: There is a need to spread knowledge beyond the neurology audience, to widen the scope of research beyond the burden of the symptoms and to employ explorative qualitative designs.