This is the second of two dynamic reviews of the evidence around people’s experience of the enduring symptoms following a COVID-19 infection.
The National Institute for Health Research (NIHR) published its first review of the evidence in October 2020. At the time there was uncertainty about the extent to which there could be lasting effects, and most people assumed a linear progression of a severe acute infection with a long recovery tail. The first review on 'Living with COVID-19' was informed by the experience of professionals working closely with a group of people with lived experience.This review focuses on the published evidence. In addition, it reports findings from a short survey of people living with COVID-19. With over 3,000 responses it provides an insight into the key issues and challenges for people living with COVID-19.
The report makes the following recommendations for the future research agenda:
- More research is needed on the incidence of Long Covid and its causes. This will help to predict and prevent Long Covid in the longer term. There is an urgent need to research treatments and management for people with Long Covid.
- The emergent nature of the understanding of Long Covid emphasises the need to continue to explore a range of hypotheses in any research that is undertaken.
- A precursor to research in all areas is a better understanding of the disease syndromes and symptom clusters that currently sit under the umbrella of Long Covid or post Covid.
- It recommends that a minimum data set for recording a wide range of symptoms be agreed and used by both researchers and healthcare providers.
- Some elements of Long Covid are similar to other conditions and evaluations of interventions (pharmaceutical, psychological and physical therapies) that may improve symptoms. The report recommends evaluation of the use of interventions that have been effective in other conditions when used with people with Long Covid. For non-pharmaceutical interventions, a range of research methodologies should be encouraged.
- Long Covid is a significant health burden that is unlikely to be met by existing NHS services and new delivery models that allow rapid access are needed. We recommend rapid evaluation of different service models and skill mix for supporting people with Long Covid.
- Seldom heard voices are not visible in the current evidence. The report recommend research that is targeted at vulnerable people (including older people and people with learning disabilities) as well as hard-to-reach groups including travellers and prison populations.
- It recommends that people living with Long Covid (who are experts by experience) should be equal partners in setting the research agenda.