Post-exertional malaise may persist in Long COVID despite learning STOP-REST-PACE

Abstract

ABSTRACT Background Physical activity used in rehabilitation can trigger post-exertional malaise (PEM) in people with Long COVID. Concerns remain if the STOP-REST-PACE approach promoted by patient communities and professional organizations can be safely administered and contributes to return to usual activities. Objective (1) To observe PEM over 12 weeks of telerehabilitation based on the STOP-REST-PACE approach. (2) To describe the changes in health-related quality of life (HRQoL), respiratory symptoms, fatigue and return to work. Methods This was an observational prospective cohort of participants with Long COVID referred to a telerehabilitation service. Participants received up to 14 h of physiotherapy and occupational therapy over 12 weeks based on the STOP-REST-PACE approach. Frequency was personalized, up to two sessions weekly. An independent coordinator assessed PEM, HRQoL, respiratory symptoms, fatigue and return to work. Results Thirty-four participants were included and 30 completed the 12 weeks of telerehabilitation. Participants had an average of eight impairments. We found PEM in all participants at baseline. After 12 weeks, PEM remained present for 19 out of 30 participants. Respiratory symptoms significantly improved (COPD Assessment Test: 19.2 ± 7.3 vs 13.8 ± 7.7, p < .001). Fatigue and HRQoL did not significantly improve (p = 0.32 and p = 0.20, respectively). Only four participants were able to work full time. Conclusions PEM persisted for close to two-third of participants despite learning the STOP-REST-PACE approach through physical and occupational therapy sessions over 12 weeks. Respiratory symptoms improved, but we did not observe a difference in fatigue and HRQoL. Return to work was out of reach for most participants.