The COVID-19 pandemic may have a significant impact on patients with narcolepsy, yet a long-term follow-up study is currently lacking. This study aims to investigate changes in symptom severity and the quality of life of patients with narcolepsy during and after the pandemic. Patients with type 1 or type 2 narcolepsy (NT1, NT2) were retrospectively recruited and prospectively followed from 2020 to 2023. They received evaluations including the Epworth Sleepiness Scale (ESS), the visual analog scale (VAS) for hypersomnolence, the VAS for cataplexy, the Short-form 36 Health Survey questionnaire (SF-36), and a sleep diary. We compared the differences between the pre-lockdown, the lockdown, the post-lockdown, and the post-pandemic periods by repeated measures ANOVA or the Friedman test, with the Bonferroni test for post hoc analysis. A total of 100 patients completed the 4-year study (mean age, 24.06 ± 7.00 years; 55% male). We observed significant differences in the ESS (p = 0.037), total nighttime sleep (p = 0.03), total sleep time (p = 0.035), and sleep efficiency (p = 0.035) during the study period. There was also significantly worse physical role functioning in the post-pandemic period (p = 0.014). In particular, the NT1 group had significantly decreased VAS-C scores (p < 0.001) but experienced worse physical role functioning in the post-pandemic period (p = 0.009). Patients with narcolepsy continue to face challenges after the pandemic. A more flexible lifestyle with an adequate sleep time may be beneficial, and medication adherence should be emphasized.

COVID-19大流行可能对发作性睡病患者产生重大影响，但目前缺乏长期随访研究。本研究旨在调查大流行期间和之后发作性睡病患者症状严重程度和生活质量的变化。回顾性招募 1 型或 2 型发作性睡病 (NT1、NT2) 患者，并从 2020 年至 2023 年进行前瞻性随访。他们接受的评估包括 Epworth 嗜睡量表 (ESS)、嗜睡视觉模拟量表 (VAS)、猝倒 VAS 、简式 36 健康调查问卷 (SF-36) 和睡眠日记。我们通过重复测量方差分析或弗里德曼检验比较了封锁前、封锁后、封锁后和大流行后时期之间的差异，并使用 Bonferroni 检验进行事后分析。共有 100 名患者完成了为期 4 年的研究（平均年龄 24.06 ± 7.00 岁；55% 为男性）。我们观察 到研究期间ESS ( p  = 0.037)、夜间总睡眠时间 ( p  = 0.03)、总睡眠时间 ( p  = 0.035) 和睡眠效率 ( p = 0.035) 存在显着差异。在大流行后时期，身体角色功能也明显恶化（p  = 0.014）。特别是，NT1 组的 VAS-C 评分显着下降 ( p  < 0.001)，但在大流行后时期身体角色功能较差 ( p  = 0.009)。大流行后，发作性睡病患者继续面临挑战。更灵活的生活方式和充足的睡眠时间可能是有益的，并且应强调药物依从性。