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

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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.

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References

  1. American Academy of Sleep Medicine. International Classification of Sleep Disorders 3rd ed Darien IL: AASM. 2014.

  2. Chin WC, Wang CH, Huang YS, et al. Quality of life changes and their predictors in young adult narcolepsy patients after treatment: A real-world cohort study. Front Psych. 2022;13:956037.

    Article  Google Scholar 

  3. Ozaki A, Inoue Y, Nakajima T, et al. Health-related quality of life among drug-naive patients with narcolepsy with cataplexy narcolepsy without cataplexy and idiopathic hypersomnia without long sleep time. J Clin Sleep Med. 2008;4(6):572–8.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Song ML, Kim KT, Motamedi GK, Cho YW. The influential factor of narcolepsy on quality of life: compared to obstructive sleep apnea with somnolence or insomnia. Sleep Biol Rhythm. 2019;17(4):447–54.

    Article  Google Scholar 

  5. Bruni O, Malorgio E, Doria M, et al. Changes in sleep patterns and disturbances in children and adolescents in Italy during the Covid-19 outbreak. Sleep Med. 2022;91:166–74.

    Article  PubMed  Google Scholar 

  6. Hawes MT, Szenczy AK, Klein DN, et al. Increases in depression and anxiety symptoms in adolescents and young adults during the COVID-19 pandemic. Psychol Med. 2021;52(14):1–9.

    Google Scholar 

  7. Sinha M, Pande B, Sinha R. Impact of COVID-19 lockdown on sleep-wake schedule and associated lifestyle related behaviour: a national survey. J of Public Health Res. 2020;9(3):1826.

    Article  Google Scholar 

  8. Pinto J, van Zeller M, Amorim P, et al. Sleep quality in times of COVID-19 pandemic. Sleep Med. 2020;74:81–5.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Nigam M, Hippolyte A, Dodet P, et al. Sleeping through a pandemic: impact of COVID-19-related restrictions on narcolepsy and idiopathic hypersomnia. J Clin Sleep Med. 2022;18(1):255–63.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Postiglione E, Pizza F, Ingravallo F, et al. Impact of COVID-19 pandemic lockdown on narcolepsy type 1 management. Brain and Behav. 2021;11(1): e01955.

    Article  Google Scholar 

  11. D’Anselmo A, Agnoli S, Filardi M, Pizza F, et al. Being creative during lockdown: the relationship between creative potential and COVID-19-related psychological distress in narcolepsy type 1. J Sleep Res. 2022;31(2): e13461.

    Article  PubMed  Google Scholar 

  12. Rodrigues Aguilar AC, Frange C, Huebra L, et al. The effects of the COVID-19 pandemic on patients with narcolepsy. J Clin Sleep Med. 2021;17(4):621–7.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Barateau L, Chenini S, Rassu AL, et al. Changes in sleep pattern during the COVID-19 lockdown in patients with narcolepsy idiopathic hypersomnia and restless legs syndrome. Neurology. 2022;99(14):e1475–85.

    Article  PubMed  Google Scholar 

  14. Marčić M, Marčić L, Marčić B. SARS-CoV-2 infection causes relapse of kleine-levin syndrome: case report and review of literature. Neurol Int. 2021;13(3):328–34.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Nasrullah A, Javed A, Ashraf O, Malik K. Possible role of COVID-19 in the relapse of klein-levin syndrome. Respir Med Case Rep. 2021;33:101445.

    PubMed  PubMed Central  Google Scholar 

  16. Chin WC, Huang YS, Tang I, et al. Impact of Taiwan’s COVID-19 lockdown on the symptom severity and quality of life of patients with narcolepsy. Sleep Biol Rhythm. 2023;21(4):419–29.

    Article  Google Scholar 

  17. Chin WC, Yao TC, Tang I, et al. The impact of COVID-19 lockdown on sleep patterns, emotions and behaviors of children and adolescents in Taiwan. Front Psych. 2022;13:975399.

    Article  Google Scholar 

  18. Johns MW. A new method for measuring daytime sleepiness: the epworth sleepiness scale. Sleep. 1991;14:540–5.

    Article  CAS  PubMed  Google Scholar 

  19. van der Heide A, van Schie MK, Lammers GJ, et al. Comparing treatment effect measurements in narcolepsy: the sustained attention to response task epworth sleepiness scale and maintenance of wakefulness test. Sleep. 2015;38(7):1051–8.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Hays RD, Hayashi T, Carson S, Ware JE. Users Guide for the Multitrait Analysis Program (MAP). RAND Corporation Santa Monica CA. 1988.

  21. Sanson-Fisher RW, Perkins JJ. Adaptation and validation of the SF-36 health survey for use in australia. J Clin Epidemiol. 1998;51(11):961–7.

    Article  CAS  PubMed  Google Scholar 

  22. Frange C, de Oliveira GP, Coelho FMS. COVID-19 and central nervous system hypersomnias. Curr Sleep Medicine Reports. 2022;8(3):42–9.

    Article  Google Scholar 

  23. Sarkanen T, Partinen M, Bjorvatn B, et al. Association between hypersomnolence and the COVID-19 pandemic: the international COVID-19 sleep study (ICOSS). Sleep Med. 2023;107:108–15.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Voss EA, Shoaibi A, Lai LYH, et al. Contextualising adverse events of special interest to characterise the baseline incidence rates in 24 million patients with COVID-19 across 26 databases: a multinational retrospective cohort study. EClinicalMedicine. 2023;58:101932.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Moura AEF, Oliveira DN, Torres DM, et al. Central hypersomnia and chronic insomnia: expanding the spectrum of sleep disorders in long COVID syndrome-a prospective cohort study. BMC Neurol. 2022;22(1):1–10.

    Article  Google Scholar 

  26. Ramberger M, Högl B, Stefani A, et al. CD4+ T-cell reactivity to orexin/hypocretin in patients with narcolepsy type 1. Sleep. 2017;40(3):zsw070. https://doi.org/10.1093/sleep/zsw070.

    Article  PubMed  Google Scholar 

  27. Bonvalet M, Ollila HM, Ambati A, Mignot E. Autoimmunity in narcolepsy. Curr Opin Pulm Med. 2017;23(6):522.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  28. Awogbindin IO, Ben-Azu B, Olusola BA, et al. Microglial implications in SARS-CoV-2 infection and COVID-19: lessons from viral RNA neurotropism and possible relevance to Parkinson’s disease. Front Cell Neurosci. 2021;15:199.

    Article  Google Scholar 

  29. Ellul MA, Benjamin L, Singh B, et al. Neurological associations of COVID-19. Lancet Neurol. 2020;19(9):767–83.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Nakayama H, Matsuzaki T, Mihara S, et al. Change of Internet use and bedtime among junior high school students after long-term school closure due to the coronavirus disease 2019 pandemic. Children. 2021;8(6):480.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Kimura S, Takaoka Y, Sugano A. Increase in the Number and Duration of Sleep Episodes During Class After Reopening of Schools Following Closure due to COVID-19. Kobe J Med Sci. 2022;68(1):E23–9.

    PubMed  PubMed Central  Google Scholar 

  32. Won C, Mahmoudi M, Qin L, et al. The impact of gender on timeliness of narcolepsy diagnosis. J Clin Sleep Med. 2014;10(1):89–95.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Filardi M, D’Anselmo A, Mazzoni A, et al. The importance of social zeitgeber in paediatric type 1 narcolepsy: what we can learn from the COVID-19 restrictions adopted in italy? J Sleep Res. 2022;31(1): e13423.

    Article  PubMed  Google Scholar 

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Funding

This study was partially supported by the Taiwan Ministry of Science and Technology (Grant #: MOST 109–2314-B-182A-112-MY3, MOST 112–2314-B-182A-032-MY3), Chang Gung Memorial Hospital (Grant #: CPRPG3M0051) awarded to Yu-Shu Huang, and Chang Gung Memorial Hospital (Grant #: CMRPG3N0441) awarded to Wei-Chih Chin.

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Authors and Affiliations

  1. Division of Psychiatry and Sleep Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan

    Wei-Chih Chin, Yu-Shu Huang & I. Tang

  2. College of Medicine, Chang Gung University, Taoyuan, Taiwan

    Wei-Chih Chin & Yu-Shu Huang

  3. College of Life Sciences and Medicine, National Tsing Hua University, Hsinchu, Taiwan

    Wei-Chih Chin

  4. Department of Psychology, Zhejiang Normal University, Jinhua, China

    Chih-Huan Wang

Authors
  1. Wei-Chih Chin
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  2. Yu-Shu Huang
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  3. I. Tang
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  4. Chih-Huan Wang
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Corresponding author

Correspondence to Yu-Shu Huang.

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None of the authors have any financial interests or conflicts of interest relevant to this article to disclose.

Ethical approval

This study was approved by the Institutional Review Board of Chang Gung Memorial Hospital (202201680B0 and 201902163A3). All participants and their legal representatives received a detailed explanation of the study, and participants provided their written informed consent before participating in this study.

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Chin, WC., Huang, YS., Tang, I. et al. Long-term follow-up of symptom and quality of life changes in patients with narcolepsy during and after the COVID-19 pandemic. Sleep Biol. Rhythms (2024). https://doi.org/10.1007/s41105-024-00521-4

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