Jung Yu Jin, Ji Ki-Hwan, Kim Daeyoung, Kim Kyung Min, Choi Yun Ho, Cho Jae Wook, Kim Hyeyun, Lee Wonwoo, Sunwoo Jun-Sang, Koo Dae Lim, Im Hee-Jin, Yang Kwang Ik
Department of Neurology, Kyung Hee University Hospital at Gangdong, College of Medicine, Kyung Hee University, Seoul, Republic of Korea.
Department of Neurology, Inje University Busan Paik Hospital, College of Medicine, Inje University, Busan, Republic of Korea.
Sleep Med. 2025 Sep;133:106646. doi: 10.1016/j.sleep.2025.106646. Epub 2025 Jun 18.
Narcolepsy is a rare chronic neurological disorder characterized by a pentad of symptoms: excessive daytime sleepiness, cataplexy, hypnagogic hallucination, sleep paralysis, and disturbed nighttime sleep. Narcolepsy begins in children and adolescents, yet most patients experience a diagnostic delay. We investigated this diagnostic delay and the factors contributing to it in Korean narcolepsy patients.
We retrospectively analyzed real-world, multi-center data from 137 patients with narcolepsy from 11 tertiary hospitals in South Korea. Demographic and clinical characteristics, polysomnography, and multiple sleep latency test data were available.
The mean age at first symptom onset and diagnosis was 18.2 ± 8.9 and 28.3 ± 13.3 years, respectively. Mean and median diagnostic delay were 10.3 ± 11.3 and 7.0 (3.0-13.0) years. In multivariable regression analysis, shorter sleep duration on holiday (β = - 0.75, p = 0.040), lower sleep efficiency (β = - 0.39, p = 0.011), reduced N2 sleep (β = - 0.17, p = 0.045), and lower nadir SpO (β = - 0.67, p = 0.013) emerged as associated factors of prolonged diagnostic delays.
The diagnostic delay for narcolepsy remains long and is related to shorter sleep duration during the holiday, and poor objective nocturnal sleep. Shortening this diagnostic delay is the key to reducing disease burden and improving quality of life. This study highlights the importance of directing advocacy and educational efforts toward narcolepsy awareness.
发作性睡病是一种罕见的慢性神经疾病，其特征为一组五种症状：日间过度嗜睡、猝倒、入睡幻觉、睡眠瘫痪及夜间睡眠紊乱。发作性睡病始于儿童和青少年时期，但大多数患者存在诊断延迟。我们对韩国发作性睡病患者的这种诊断延迟及其相关因素进行了调查。
我们回顾性分析了来自韩国11家三级医院的137例发作性睡病患者的真实世界多中心数据。可获取人口统计学和临床特征、多导睡眠图及多次睡眠潜伏期测试数据。
首次出现症状和诊断时的平均年龄分别为18.2±8.9岁和28.3±13.3岁。平均诊断延迟和中位诊断延迟分别为10.3±11.3年和7.0（3.0 - 13.0）年。在多变量回归分析中，节假日睡眠时间较短（β = - 0.75，p = 0.040）、睡眠效率较低（β = - 0.39，p = 0.011）、N2期睡眠减少（β = - 0.17，p = 0.045）以及最低血氧饱和度较低（β = - 0.67，p = 0.013）是诊断延迟延长的相关因素。
发作性睡病的诊断延迟仍然很长，且与节假日睡眠时间较短以及夜间客观睡眠质量差有关。缩短这种诊断延迟是减轻疾病负担和改善生活质量的关键。本研究强调了针对发作性睡病认知开展宣传和教育工作的重要性。
