Clinical Characteristics, Comorbidities, and Quality of Life in Korean Patients With Narcolepsy: Findings From an Online Survey

Abstract

Objectives: Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and abnormal rapid eye movement sleep, both of which significantly impact daily functioning and quality of life. This study aimed to examine the clinical characteristics, comorbidities, diagnostic delays, and quality of life of Korean patients with narcolepsy through a comprehensive nationwide survey.Methods: An online survey targeting members of the Korea Narcolepsy Association was conducted between July and October 2023. The survey collected demographic information, clinical characteristics, comorbid conditions, diagnostic tools, and quality of life assessments using the World Health Organization Quality of Life-BREF (WHOQOL-BREF).Results: A total of 299 individuals participated in the study, with a mean age of 32.2 years. The average diagnostic delay was approximately 11 years, with initial symptoms appearing at a mean age of 16.6 years. Excessive daytime sleepiness was the most common initial symptom. The most frequent comorbidities included depression, obstructive sleep apnea, and anxiety disorders. WHOQOL-BREF scores indicated a moderately low quality of life across all domains, with patients having narcolepsy type 1 experiencing more severe symptoms and lower quality of life scores than those of patients having narcolepsy type 2. Higher education levels, marital status, and regular exercise were positively associated with better WHOQOL-BREF scores, whereas depression, older age, and poor sleep quality were negatively associated.Conclusions: The findings from this survey underscore the lower quality of life, with notable delays in diagnosis and a high prevalence of comorbid conditions. The results suggest a need for improved awareness, timely diagnosis, and comprehensive management strategies that address both the primary symptoms of narcolepsy and its associated comorbidities.