Some people are experiencing symptoms for weeks and months following initial Covid-19 infection. This article discusses the findings of an evidence review by the National Institute for Health Research; it is an early online publication and will be updated shortly with a print-friendly PDF
An increasing number of people are experiencing symptoms of Covid-19 for weeks or months after initial infection. Although this is commonly referred to as ‘long Covid’, the National Institute for Health Research Centre for Engagement and Dissemination is not convinced the varying physical and psychological symptoms are all caused by just one syndrome. It has recently published the start of a dynamic evidence review on the phenomenon, which will be updated over the next six months as new findings emerge.
Citation: Maxwell E (2020) Living with the ongoing effects of Covid-19: gathering the evidence. Nursing Times [online]; 116: 11, early online publication.
Author: Dr Elaine Maxwell is content lead, National Institute for Health Research Centre for Engagement and Dissemination.
This time last year we did not know that in 2020 our personal and professional lives would be dominated by Covid-19. Even in March and April of this year, we did not realise that by the autumn we would be talking about people ‘living with Covid-19’.
When the pandemic initially struck, attention was rightly focused on acute care and public health measures to reduce transmission. Little was known about the after-effects of the virus and, when we at the National Institute for Health Research (NIHR) Centre for Engagement and Dissemination first started thinking about producing an evidence review, we thought this would involve synthesising what is already known about rehabilitation. However, we brought together an expert steering group that quickly realised the challenge was wider than this and that our most useful contribution would be to examine what is known about the phenomenon commonly referred to as ‘long Covid’. We have published the start of what will be a dynamic review of the evidence.
We recognise that, although there is little formal research data, there are rich seams of evidence from professional experience and from the lived experience of people living with the ongoing effects of Covid-19. Members of the Long Covid Facebook Group joined our patient reference group and gave their time generously despite being unwell. Our review aims to bring together the evidence from the formal research data, professional experience and lived experience to understand what is happening now and to frame the discussion around the types of service required by people living with long-term Covid-19, and the additional research questions we should be asking.
There is growing evidence of significant and increasing numbers of people remaining unwell for weeks and months after infection with SARS-CoV-2, the coronavirus that causes Covid-19. This evidence comes from a number of small studies in countries hit hard by the virus, including Italy, and also from the ‘citizen science’ of people experiencing these symptoms who are self-organising to collect data, including the Body Politic and LongCovidSOS campaigns. It is becoming increasingly clear that, for some people, Covid-19 is not a discrete episode but one that marks the start of ongoing and often debilitating symptoms. A commonality of the published evidence is the identification of continuing symptoms, well beyond the 2-3-week recovery people are told to expect.
However, when our steering group looked at the patterns of symptoms closely we were not convinced they were all caused by just one syndrome; therefore we do not use the term long Covid in order to avoid creating a catch-all term without better understanding of the nature of the phenomenon. We saw patterns that are consistent with post-critical illness rehabilitation needs and others consistent with post-viral fatigue. However, we also heard experiences that are not consistent with these, and we query whether these are due to a new post-acute Covid syndrome. We spoke to people who appear to have more than one such syndrome, for example a man who was ventilated and received rehabilitation care for post-intensive care syndrome following discharge from hospital; this helped him but he now has a persistent pattern of symptoms similar to people who were never admitted to hospital.
Distinguishing between the different types of ongoing problem is important for making care decisions. For example, while there is strong evidence for graded exercise in rehabilitation services such as those for post-intensive care syndrome, it can cause more trouble than benefit for people with post-viral fatigue syndrome. It is also important to investigate and treat organ damage caused by Covid-19, and our review discussed the evidence around lasting lung and cardiac damage. However, there remains a significant number of people for whom no diagnostic tool or treatment is available. Many are seven months into a condition that leaves them unable to work, study or care for dependants, have little or no access to support services and face an uncertain future.
“Patients said the most useful change would be for all health professionals to believe what people with Covid-19 are telling them”
Nature of symptoms
Although many organisations have listed a comprehensive range of symptoms under the broad title of long Covid, the most important thing we learnt from our patient reference group is that living with Covid-19 is not a linear journey that moves from an acute to a chronic phase. Some people who were critically ill in intensive care do not develop chronic symptoms, and many who were never tested due to the lockdown earlier in the year are now completely incapacitated. People often describe their experience as a rollercoaster, with good periods followed by bad periods on a seemingly unending cycle. For them this is far from a mild disease, even if it did not begin with life-threatening symptoms. People also describe symptoms moving around the body: as their respiratory or cardiac symptoms improve and they think they are recovering, they experience neurological symptoms, skin rashes or blood clots and the cycle continues.
In addition to the physical symptoms, there are psychological consequences of living with Covid-19. A Canadian study of people who had contracted SARS, a related virus, found 44% had used mental health services. Anxiety is one of the symptoms reported by people living with Covid-19: our patient reference group told us in many cases it is the symptoms that are causing the anxiety rather than the other way round. The steering group questioned whether anxiety may be related to isolation caused by lockdown conditions rather than to Covid-19; it also discussed whether anxiety and other reported problems – such as ‘brain fog’ – might be due to the virus directly affecting the brain. This indicates the complexity of assessing the impact of Covid-19.
The multisystem nature of the condition means people need to be supported in a holistic manner. The patient reference group highlighted the frustration of having separate appointments for respiratory medicine, cardiology and neurology, describing the experience of living with Covid-19 as more than the sum of its individual symptoms. An Italian study found that 40% of people with ongoing symptoms said it had reduced the quality of their life.
The uncertainty about this new condition means people are often doubted when they share their histories with health professionals; the patient reference group said the single most useful change would be for all health professionals to be aware of the problems and to believe what people with Covid-19 are telling them. They said this doubt can also extend to their families, friends and employers. Nurses living with Covid-19 who are unable to work have told us they have received mixed – and at times unsympathetic – responses from their employers, who are unsure how to manage their absences. Many have reached the end of their sickness pay entitlement and face financial difficulties.
“There might be a sizable group of people with a new long-term condition, and a better understanding of it would help the NHS plan to manage this”
Prevalence and response
We do not know how many people are experiencing the ongoing effects of Covid-19. Although we suggest there may be more than one syndrome involved, we recommend the NHS develops a working diagnosis of long-term Covid and a standard electronic health record code that would capture all NHS contacts, including 111 and primary, secondary and community care.
We also do not know who has the highest risk of ongoing problems; however, we have spoken to people living with Covid-19 of all age groups, and have been told that it affects young children. We are unsure whether the risk factors for long-term Covid are the same as or different from the risk factors for dying from Covid-19. Our steering group has heard there may be an increased risk for people with learning disabilities and we recommend urgent analysis of all seldom-heard groups, including care home residents, homeless people and people in prison. There might be a sizable group of people with a new long-term condition, and a better understanding of its prevalence and at-risk populations would help the NHS and social care services plan to manage this.
The patient reference group highlighted difficulties in accessing support services. The NHS is under immense strain from the backlog of delayed consultations and treatment, as well as the continuing needs of people with acute Covid-19; GPs are overwhelmed with demand and decisions need to be made about balancing needs. This necessarily includes developing one-stop diagnostic clinics; however, people without a clear pathology, or for whom limited treatment is available, will also need practical help to adjust to their changed health status and to develop personal coping strategies. This will require multidisciplinary input, including from clinical psychologists, physiotherapists and occupational therapists, and there is a significant role for nurses supporting people in their own homes.
Our review is the start of a dynamic consideration of the evidence and we will update it as new findings emerge. We describe studies that have been commissioned and will report on their progress over the next six months. We suggest that more studies are needed into both the biomedical and psychosocial impacts of living with long-term Covid-19 and we recommend urgent consideration of the models of service delivery to support this group. These need to be rigorously evaluated to ensure we understand what can benefit people living with Covid-19 and their families.
We are asking people of all backgrounds to help us by letting us know of evidence that should be included in our updates. We are also asking people living with Covid-19 to complete our anonymised survey to improve our understanding of the condition.
The long-term effects of Covid-19 are just beginning to emerge; it is unclear how long they last but they are likely to have a significant impact on both individuals and society. Our review aims to be the start of a wider understanding of the challenge.
- There is growing evidence of some people remaining unwell for weeks and months after developing Covid-19
- This is commonly called long Covid, however the National Institute for Health Research Centre for Dissemination and Engagement is unconvinced the symptoms are caused by just one syndrome
- A patient reference group reports varying physical and psychological symptoms and describes difficulty accessing support services
- The National Institute for Health Research has started publishing a dynamic evidence review and invites patients and professionals to submit information