How Long Is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service

Abstract

Background: Post COVID-19 syndrome or long COVID (LC) is a novel fluctuating condition with a protracted course in some patients. Specialist LC services have been operational in the UK since 2020 and deal with a high caseload of patients. Aims: To evaluate long-term outcomes in patients discharged from a community-based LC specialist service. Methods: A service evaluation study that included patients who were well engaged in the services [completed the standard Patient Reported Outcome Measures (PROMs) and received intervention from clinician(s)] and had been discharged for at least 3 months from the service. They consented to the study and completed standard PROMs: COVID-19 Yorkshire Rehabilitation Scale (C19-YRS), EQ-5D-5L and National Institute for Health and Care Excellence (NICE) criteria for myalgia encephalomyelitis/chronic fatigue syndrome (ME/CFS). Results: Out of 460 patients contacted, 112 (average of 37.6 months since infection and 9.8 months post-discharge) completed the PROMs. Of these, 90.2% patients continued to experience LC symptoms and disability and had not returned to their pre-COVID-19 health status. The average EQ-5D-5L index score was 0.53 (SD 0.29), highlighting a significant disability and that LC had become a long-term condition (LTC) in the majority of patients who responded to the survey. Of these patients, 43% met the criteria for suspected ME/CFS. Conclusions: A proportion of LC patients develop persistent long COVID (PLC) consistent with a LTC and had a significant overlap with ME/CFS.