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:10.1183/23120541.00141-2021

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

ERJ Open Res. 2021 May 24;7(2):00141-2021. doi: 10.1183/23120541.00141-2021. eCollection 2021 Apr.

Authors

Anouk W Vaes¹, Yvonne M J Goërtz^{1

2

3}, Maarten Van Herck^{1

2

3

4}, Felipe V C Machado^{1

2

3}, Roy Meys^{1

2

3}, Jeannet M Delbressine¹, Sarah Houben-Wilke¹, Swetlana Gaffron⁵, Dieter Maier⁶, Chris Burtin⁴, Rein Posthuma^{1

2

3}, Nicole P H van Loon^{1

7}, Frits M E Franssen^{1

2

3}, Bita Hajian^{1

2

3}, Sami O Simons^{2

3}, Job F M van Boven⁸, Frederikus A Klok⁹, Bart Spaetgens⁷, Claire M H Pinxt⁷, Limmie Y L Liu⁷, Geertjan Wesseling², Yvonne Spies¹⁰, Herman Vijlbrief¹⁰, Alex J van 't Hul¹¹, Daisy J A Janssen^{1

12}, Martijn A Spruit^{1

2

3}

Affiliations

¹ Dept of Research and Development, Ciro, Horn, The Netherlands.
² Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, The Netherlands.
³ Dept of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, The Netherlands.
⁴ REVAL - Rehabilitation Research Center, BIOMED - Biomedical Research Institute, Faculty of Rehabilitation Sciences, Hasselt University, Diepenbeek, Belgium.
⁵ Viscovery Software GmbH, Vienna, Austria.
⁶ Biomax Informatics AG, Planegg, Germany.
⁷ Dept of Internal Medicine, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands.
⁸ Dept of Clinical Pharmacy and Pharmacology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
⁹ Dept of Medicine - Thrombosis and Hemostasis, Leiden University Medical Center, Leiden, The Netherlands.
¹⁰ Lung Foundation Netherlands, Amersfoort, The Netherlands.
¹¹ Dept of Pulmonary Disease, Radboud University Medical Center, Nijmegen, The Netherlands.
¹² Dept of Health Services Research, Care and Public Health Research Institute, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.

Abstract

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.