Long-term follow-up of symptom and quality of life changes in patients with narcolepsy during and after the COVID-19 pandemic

Abstract

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.

Keywords: COVID-19; Cataplexy; Daytime sleepiness; Narcolepsy; Post-pandemic.

Fig. 1

Timeline of the pre-lockdown, lockdown, post-lockdown, and post-pandemic periods (2020–2023)

Fig. 2

A Changes of the ESS and VAS scores of narcolepsy type 1, narcolepsy type 2, and total participants during the four-year study period (2020–2023). p < 0.05. ESS: Epworth Sleepiness Scale, VAS: Visual Analogue Scale. B Changes in the SF-36 scores of narcolepsy type 1, narcolepsy type 2, and total participants during the four-year study period (2020–2023). p < 0.05. SF36: Short-form 36 Health Survey Questionnaires. C Changes in the sleep diary of narcolepsy type 1, narcolepsy type 2, and total participants during the four-year study period (2020–2023). p < 0.05