The most comprehensive guidance for the diagnosis and treatment of people with long COVID in the UK has been published.
The Imperial College London-led recommendations offer an evidence-based toolkit to help doctors investigate causes of people’s wide-ranging symptoms, and strategies for the effective and timely management of the condition.
Long COVID is thought to affect more than one million people in the UK alone, yet as a relatively new illness it is still poorly understood and therefore can be difficult to diagnose and treat. While there is no agreed definition, it is often defined as having symptoms for four weeks or more after infection with the coronavirus.
"There has been an urgent need for clear guidance to help patients access the support they require." Prof Brendan Delaney Institute of Global Health Innovation
Professor Brendan Delaney, lead author from the Institute of Global Health Innovation, said: “Long COVID is a brewing public health crisis, yet there is no consistent system for how to manage people affected in the UK, meaning that when patients go to their GP they often find themselves being bounced back and forth with different referrals and no clear answers.
"There has therefore been an urgent need for clear guidance to help patients access the support they require, and we believe our evidence-led recommendations are a major step towards meeting this need.”
Consulting long COVID experts
As large-scale research projects are yet to get going, the research team convened a group of 33 experts with experience of long COVID to address the current knowledge gap and reach a consensus on best practice. The panel consisted of doctors from a range of specialties, 29 of whom had lived experience of long COVID.
Published in the British Journal of General Practice, the research found that although people with long COVID present with a broad range of symptoms, common patterns exist. Many people experience neurological symptoms such as brain fog; heart problems; breathlessness; allergic responses; and/or effects on the autonomic nervous system, which controls processes like breathing and heart rate.
Although these could be signs of other illnesses, the researchers argue that long COVID should be considered in people presenting with these common symptoms so that doctors can carry out appropriate investigations. Such assessments should be face-to-face initially in general practice and then in specialist clinics, led by doctors that have: 1) experience managing the condition and 2) the expertise needed to rule out the possibility of other potential and serious underlying causes like organ damage, the authors say.
A personalised approach
Because long COVID can affect people in very different ways, there is no one-size-fits-all approach and management plans should be personalised to each individual’s experience, according to the recommendations. To help doctors develop tailored strategies, the authors advise on which medical tests can offer the most useful and relevant information to guide treatment decisions.
"Long COVID needs to become part of the conversation between employers and employees, and legitimised." Dr Clare Rayner Occupational physician
For example, for people experiencing cognitive problems like brain fog that are impacting their work and social functioning, doctors should consider carrying out neurological assessments and brain MRI scans.
“Long COVID is having a major impact on the UK’s workforce as many people are unable to work with the debilitating symptoms that they are experiencing, causing some people to lose their jobs,” said Dr Clare Rayner, study author and occupational physician. “It’s clear that as well as appropriate and timely medical management, people affected require rehabilitation in the workplace as well. Long COVID needs to become part of the conversation between employers and employees, and legitimised.”
Dr Rayner added: “It is imperative that doctors record the occupational status of people with long COVID. Are they in or out of work? Have they had to reduce their hours? If these events are not recorded, they cannot be counted.”
Treating long COVID
In addition to the diagnostic tests, many of which will be normal, the research identified effective treatments for the most common symptoms experienced by people with long COVID. For example specialist physiotherapy should be considered for people with breathlessness. And the earlier people were treated, the better they fared.
"Through this work we have identified treatments that can and do work." Dr Martine Nurek Institute of Global Health Innovation
“Early and holistic treatment of symptoms helps people get better sooner, and through this work we have identified treatments that can and do work,” said study author Dr Martine Nurek from the Institute of Global Health Innovation.
“Our work highlights the importance of rest in the initial weeks following infection, as this can lead to a better outlook for people experiencing symptoms. Policies and support systems should therefore be in place that give people the time and means to recover fully. We hope that our recommendations will underpin the development of such interventions.”
The research was funded by the National Institute of Health Research through the NIHR Imperial Patient Safety Translational Research Centre, part of the Institute of Global Health Innovation, and supported by the NIHR Imperial Biomedical Research Centre.
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