Published: 15 October 2020
The NIHR Centre for Engagement and Dissemination (CED) has today published its first dynamic themed review of the scientific evidence on, and lived experience of, long-term ‘ongoing’ COVID-19.
‘Living with COVID’ draws on the most up-to-date expert consensus and published evidence, as well as the lived experience of both post-hospitalised and non-hospitalised COVID-19 patients, to better understand the impact of ongoing effects of COVID19, how health and social care services should respond, and what future research questions might be.
The review’s findings include:
- Ongoing COVID may not be one syndrome but possibly up to four different syndromes.
- A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
- A working diagnosis recognised by healthcare services, employers and government agencies would facilitate patient access to much needed support and provide the basis for planning appropriate services.
- There are powerful stories that ongoing COVID symptoms are experienced by people of all ages, and people from all backgrounds. We cannot assume that groups who are at low risk of life threatening disease and death during acute infections are also at low risk of ongoing COVID.
Symptoms - what the research so far tells us
The review finds that, while we are at an early stage of understanding the disease, a number of small surveys are reporting remarkably similar findings, with a wide range of recurring symptoms experienced by both post-hospitalised and non-hospitalised COVID-19 patients. These affect the respiratory system, the brain, cardiovascular system and heart, the kidneys, the gut, the liver and even skin. They can range in intensity and duration and do not necessarily present in a linear or sequential manner.
Such a wide range of symptoms creates diagnostic uncertainty, with the review suggesting that ongoing COVID may in fact be due to a number of different syndromes such as Post Intensive Care syndrome, Post Viral Fatigue syndrome and Long Term COVID syndrome and permanent organ damage, which some patients may be experiencing simultaneously.
The absence of a definition may impact the ability of patients to have their symptoms and experiences properly recognised and treated by healthcare services, which can in turn have a further psychological impact, especially for non-hospitalised patients who were never formally diagnosed.
The review outlines how a working diagnosis recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. While no single definition at this early stage may be appropriate, an NHS code for clinical datasets and further diagnostic guidance is needed.
Further, the review found that, with one or two exceptions, much of the commissioned research into COVID-19 so far looks at a single symptom or physiological system rather than the whole experience. The challenge now is to design research that integrates reported lived experience needs with clinical models of care, and which recognise the social and psychological consequences of ongoing COVID.
Dr Elaine Maxwell, review author, Content Lead for NIHR CED, said: “This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives, and how healthcare services have at times struggled to manage these new and fluctuating patterns of symptoms and problems.
“Our aim is that healthcare services and staff will use this review to better understand the experiences patients have to deal with, and provide them with the access to treatment, care and support they need.
“While research is at an early stage, listening to the testimony of people living with the ongoing effects of Covid19 provides rich insights into where we should focus future research, as well as the services we should be commissioning now.”
Capturing the experience of ‘Long COVID’
The NIHR CED held a focus group with 14 members of the Long COVID Facebook group, featuring both post-hospitalised and non-hospitalised patients.
Their testimony clearly shows that ongoing COVID can be a cyclical disease, with symptoms moving around different body systems and fluctuating in severity over time. The group described multiple, unpredictable symptoms across respiratory, cardiovascular, urological, neurological/cognitive, dermatological, gastrointestinal, and musculoskeletal systems.
Given diagnostic uncertainty, patients felt that an emphasis on acute respiratory problems created a misleading impression that anything else was a ‘mild case’ that would take two weeks recovery. The group felt such a binary view, reinforced by the responses they received from healthcare services, ignored the devastating impact of other symptoms and coloured the perception of public and of health professionals toward ‘Long COVID’. In some cases this led to substantial difficulties in patients having their symptoms recognised and treated.
Hospitalised patients, though expecting to need more time to recover than those who were not, were sometimes left frustrated by a lack of clear and consistent advice. The group as a whole often felt isolated and unacknowledged.
While this is a new disease and we are learning more about its impact, the review finds that health and social care services will need to be better equipped to support people with ongoing COVID, as emerging evidence is showing there are significant psychological and social impacts that will have long term consequences for individuals and for society.
How you can get involved
The review is the first output from NIHR CED's project to develop a real-time knowledge-base in this emerging field.
New evidence is emerging daily. By posting evidence now, we are encouraging a dynamic cycle of feedback and refinement. We want all readers, whatever their background, to work with us to develop our collective understanding and help improve care for people living with Covid19.
For example, we are running a survey for people with until January 2021 to gather data from other people who have been experiencing COVID-19 symptoms. Take our survey.
Also, we want you to help us identify new sources of evidence on the nature and duration of ongoing COVID, such as research studies both published and commissioned, and resources for healthcare professionals and the public.