NICE, RCGP and SIGN publish guideline on managing the long-term effects of COVID-19

NICE, the Royal College of General Practitioners (RCGP) and the Scottish Intercollegiate Guidelines Network (SIGN) have today (18 December 2020) published a guideline on the management of the long-term effects of COVID-19 (also known as Long COVID).

The guideline covers the care of people who have signs and symptoms that develop during or after an infection consistent with COVID-19, that continue for more than 4 weeks and are not explained by an alternative diagnosis. It provides recommendations based on the current evidence and expert consensus, and will be adapted as new evidence emerges.

Most people’s symptoms of COVID-19 resolve within 12 weeks. However, for a sizeable minority of people symptoms can persist or new ones develop, and can sometimes worsen, and have a continuing negative impact on their quality of life. Longer term impacts can include shortness of breath, fatigue, and problems involving the heart, lungs, kidneys, nervous system and muscles and joints.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “This guideline highlights the importance of providing people with good information after they’ve had acute COVID-19 so they know what to expect and when they should ask for more medical advice. This could help to relieve anxiety when people do not recover in the way they expect, particularly because symptoms can fluctuate and there are so many different symptoms reported.

“Because this is a new condition and there is still much that we don’t know about it, the guideline will be adaptable and responsive as understanding of the condition grows and new evidence about how to manage it emerges.”

The guideline says that people may have ongoing symptomatic COVID-19 if they present with symptoms 4 to 12 weeks after the start of acute symptoms and may have post-COVID syndrome if their symptoms have not resolved after 12 weeks.

The guideline also emphasises the need to address health inequalities in care for people experiencing ongoing symptoms. It recommends providing extra support and raising awareness to help improve access to care, as well as more proactive follow-up of people from vulnerable/high-risk groups who could be at increased risk of complications.

The guideline makes recommendations in a number of other areas, including:

  • Assessing people with new or ongoing symptoms after acute COVID-19.
  • Investigations and referral.
  • Planning care.
  • Management, including self-management, supported self-management, and rehabilitation.
  • Follow-up and monitoring.
  • Service organisation.

 The guideline also includes a number of key recommendations for research which will help inform and enhance future versions as evidence and practice develops.

Dr Waqaar Shah, chair of the Independent Expert Advisory Panel, said: “This guideline will help reduce the uncertainty and challenges facing healthcare professionals in the management of long-term effects of COVID-19, an area where evidence is currently in short supply. We know this novel condition can have a significant impact on people’s quality of life, and through this guideline, we are able to define the best standard of care. Further, the developer will be frequently reviewing this ‘living document’ and updating in line with emerging evidence.

“For the first time, we can recommend standards in information provision to people with long term effects of COVID-19, address the uncertainty and doubt these people have, and empower them to understand their symptoms and to recognise when to seek help. In a bid to address health inequality, we have made a recommendation to support underserved and vulnerable groups. We have suggested health systems address the overall impact of symptoms in people with long term effects of COVID-19, advocating the use of multidisciplinary clinics to assess physical and mental health symptoms backed with appropriate investigations.

“I am delighted to report lived experienced featured highly in this guideline development. Our qualitative evidence reviews consulted the patient perspective, and six expert panel members who had experience as patients with long-term effects of COVID-19 provided a rich background and poignancy to the development of our recommendations.”

Because this is a new condition and there is still much that we don’t know about it, the guideline will be adaptable and responsive as … new evidence about how to manage it emerges.

Paul Chrisp, director of the Centre for Guidelines at NICE

We hope [this guideline] will be useful for GPs and other healthcare professionals and will have a positive impact on the care delivered to patients with prolonged symptoms of COVID-19.

Professor Martin Marshall, Chair of the Royal College of General Practitioners