ERJ Open Research (May 2021)

Recovery from COVID-19: a sprint or marathon? 6-month follow-up data from online long COVID-19 support group members

  • Anouk W. Vaes,
  • Yvonne M.J. Goërtz,
  • Maarten Van Herck,
  • Felipe V.C. Machado,
  • Roy Meys,
  • Jeannet M. Delbressine,
  • Sarah Houben-Wilke,
  • Swetlana Gaffron,
  • Dieter Maier,
  • Chris Burtin,
  • Rein Posthuma,
  • Nicole P.H. van Loon,
  • Frits M.E. Franssen,
  • Bita Hajian,
  • Sami O. Simons,
  • Job F.M. van Boven,
  • Frederikus A. Klok,
  • Bart Spaetgens,
  • Claire M.H. Pinxt,
  • Limmie Y.L. Liu,
  • Geertjan Wesseling,
  • Yvonne Spies,
  • Herman Vijlbrief,
  • Alex J. van ’t Hul,
  • Daisy J.A. Janssen,
  • Martijn A. Spruit

DOI
https://doi.org/10.1183/23120541.00141-2021
Journal volume & issue
Vol. 7, no. 2

Abstract

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Background It remains unknown whether and to what extent members of online “long COVID” peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID peer support groups up to 6 months after the onset of coronavirus disease 2019 (COVID-19)-related symptoms. Methods Demographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID peer support groups. Results Data from 239 patients with a confirmed COVID-19 diagnosis (83% women; median (interquartile range) age 50 (39–56) years) were analysed. During the infection, a median (interquartile range) of 15 (11–18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4–9) and 6 (3–8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%, respectively), self-reported good health (9.2% versus 16.7%), functional status (mean±sd Post-COVID-19 Functional Status scale: 2.4±0.9 versus 2.2±1.0) and health-related quality of life (all p<0.05). Conclusion Although patients with confirmed COVID-19, who were all members of online long COVID peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow-up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate-to-severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients.