P108 Characterising recovery from long COVID: findings from a longitudinal online survey

Ziauddeen, Nida, Pantelic, Marija, O'Hara, Margaret E., Hastie, Claire and Alwan, Nisreen A. (2023) P108 Characterising recovery from long COVID: findings from a longitudinal online survey. Journal of Epidemiology & Community Health, 2023 (77), A102-A103. (doi:10.1136/jech-2023-SSMabstracts.212).

Abstract

Background: Long Covid (LC) is a health condition that develops following SARSCoV2 infection, predominantly presenting with multiple multi-system symptoms that commonly fluctuate in intensity, and often resulting in functional disability limiting day-to-day activities. Because of the episodic nature of LC in some of those experiencing it, recovery is not straightforward to define. We aimed to characterise recovery from LC.

Methods: data from a one-year follow-up of people who participated in an online survey originally conducted in November 2020 were used. Respondents were adults with self-reported LC following confirmed (antigen or antibody) or suspected COVID-19 who were not hospitalised in the first two weeks of illness. The baseline survey recruited mostly from online support groups using convenience non-probability sampling. Both the baseline and follow-up surveys were co-produced with people living with LC including how to phrase the recovery questions.

Results: 1153 participants responded to the follow-up survey in November 2021 (52%). The mean age was 47.7 years (standard deviation 10.6) with 84% females, 82.5% UK-based, 77.5% university-qualified and 90% reporting good to excellent health before SARSCoV2 infection.

86% of participants reported being ill for 18 months or more. 68.8% (n=792) stated that they are still experiencing LC symptoms and 4.7% (n=54) considered themselves fully recovered. 28% reported feeling the potential for relapse including 6% (n=3/54) of those who considered themselves recovered. Amongst those still experiencing symptoms, 39.7% (n=314) felt ‘stable’ but with a lower level of health/activity and 3.5% (n=28) felt ‘stable’ and close to pre-infection level of health/activity. Among those reporting not experiencing symptoms or feeling recovered (assumed to be between relapses), 15.5% (n=178) and 6.9% (n=79) felt ‘stable’ at lower level and close to pre-infection level respectively.

59% of participants reported never having a symptom-free day. 48.6% reported having received a diagnosis of LC with a further 28.1% reporting their doctor suspected LC. 42% reported having received a new diagnosis other than LC since COVID-19. 33.2% reported LC affected their ability to care for themselves, 19.3% care for children, 51.4% personal relationships, and 61.1% their work with 6.4% (n=74) losing and 11.7% (n=135) resigning or leaving their job.

Conclusion: this study highlights the prolonged and commonly disabling nature of LC as well as the heterogeneity of life impact and recovery patterns. Research is needed in a representative population sample to further characterise recovery, associated episodic disability and potential adaptations to manage illness and avoid triggering relapse or symptom exacerbation.

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Contributors

Author: Nida Ziauddeen

Author: Nisreen A. Alwan

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