Overview

This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’. It makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.

This guideline has been developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).

To develop the recommendations, we have used the following clinical definitions for the initial illness and long COVID at different times:

• Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks.
• Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks.
• Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

When using this guideline, follow the usual professional guidelines, standards and laws (including those on equalities, safeguarding, communication and mental capacity), as described in making decisions using NICE guidelines.

Context

This guideline has been developed collaboratively by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP). It covers care for people who have signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 4 weeks and are not explained by an alternative diagnosis.

This new and emerging condition, which has been described using a variety of terms including ‘long COVID’, can have a significant effect on people’s quality of life. It also presents many challenges when trying to determine the best-practice standards of care based on the current evidence. There is no clinical definition or clear treatment pathway, and there is a minimal, though evolving, evidence base. This guideline provides clinical definitions of the effects of COVID-19 at different times (see below). It also provides advice on diagnosis and management based both on the best available evidence and the knowledge and experience of the expert panel.

NICE, SIGN and the RCGP have developed the guideline using a ‘living’ approach, which means that targeted areas of the guideline will be continuously reviewed and updated in response to emerging evidence.

1. Identifying people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome

These recommendations are for healthcare professionals caring for people who have had suspected or confirmed acute COVID-19 and present to any healthcare setting, irrespective of whether they were hospitalised or had a positive or negative SARS-CoV-2 test (PCR, antigen or antibody).

1.1.

Give people who have had suspected or confirmed acute COVID-19 (and their families or carers, as appropriate) advice and written information on:

• the most common new or ongoing symptoms after acute COVID-19 (see the section on common symptoms of ongoing symptomatic COVID-19 and post-COVID-19 syndrome)
• what they might expect during their recovery, including that:

  –

  recovery time is different for everyone but for many people symptoms will resolve by 12 weeks

  –

  the likelihood of developing ongoing symptomatic COVID-19 or post-COVID-19 syndrome is not thought to be linked to the severity of their acute COVID-19 (including whether they were in hospital)

  –

  if new or ongoing symptoms occur they can change unpredictably, affecting them in different ways at different times

• how to self-manage ongoing symptomatic COVID-19 or post-COVID-19 syndrome (see the recommendations on self-management and supported self-management)
• symptoms to look out for that mean they should contact their healthcare professional
• who to contact if they are worried about new, ongoing or worsening symptoms, especially if they have them more than 4 weeks after the start of acute COVID-19.

1.2.

Provide all information in accessible formats so that people can understand and take part in decisions about their care. Follow relevant national guidance on communication, providing information (including different formats and languages) and shared decision making, for example, NICE’s guideline on patient experience in adult NHS services.

1.3.

Suspect previous COVID-19 illness as a possible underlying cause of new or ongoing symptoms in people after acute COVID-19 as follows:

• ongoing symptomatic COVID-19 if people present with symptoms 4 to 12 weeks after the start of acute COVID-19 or
• post-COVID-19 syndrome if the person’s symptoms have not resolved 12 weeks after the start of acute COVID-19.

1.4.

For people who are concerned about new or ongoing symptoms 4 weeks or more after acute COVID-19, offer an initial consultation and use shared decision making to discuss and agree with the person whether it should be by video, phone or in person.

1.5.

Consider using a screening questionnaire as part of the initial consultation to help capture all of the person’s symptoms. These should only be used in conjunction with clinical assessment.

1.6.

Be aware that some people (including children and older people) may not have the most commonly reported new or ongoing symptoms after acute COVID-19.

1.7.

Based on the initial consultation, use shared decision making to discuss and agree with the person whether they need a further assessment and whether this should be by phone, video or in person. Take into account whether they may have symptoms that need investigating in person or require urgent referral to an appropriate service.

1.8.

Support access to assessment and care for people with new or ongoing symptoms after acute COVID-19, particularly for those in underserved or vulnerable groups who may have difficulty accessing services, for example by:

• providing extra time or additional support (such as an interpreter or advocate) during consultations
• raising awareness about possible new or ongoing symptoms of COVID-19 – this may include working with local community leaders or organisations – particularly in vulnerable groups and black, Asian and minority ethnic groups.

See the equality impact assessment for more information about the equality issues considered.

1.9.

Consider follow-up by primary care or community services for people in vulnerable or high-risk groups who have self-managed in the community after suspected or confirmed acute COVID-19.

1.10.

A healthcare professional in secondary care should offer a video or phone follow-up consultation at 6 weeks after discharge to people who have been in hospital with acute COVID-19 to check for new or ongoing symptoms or complications.

2. Assessing people with new or ongoing symptoms after acute COVID-19

These recommendations are for healthcare professionals assessing people in any healthcare setting, 4 weeks or more after the start of suspected or confirmed acute COVID-19.

2.1.

For people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome who have been identified as needing an assessment, use a holistic, person-centred approach. Include a comprehensive clinical history and appropriate examination that involves assessing physical, cognitive, psychological and psychiatric symptoms, as well as functional abilities.

2.2.

Include in the comprehensive clinical history:

• history of suspected or confirmed acute COVID-19
• the nature and severity of previous and current symptoms
• timing and duration of symptoms since the start of acute COVID-19
• history of other health conditions.

2.3.

Be aware that people can have wide-ranging and fluctuating symptoms after acute COVID-19, which can change in nature over time.

2.4.

Discuss how the person’s life and activities, for example their work or education, mobility and independence, have been affected by ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome.

2.5.

Discuss the person’s experience of their symptoms and ask about any feelings of worry or distress. Listen to their concerns with empathy and acknowledge the impact of the illness on their day-to-day life, for example activities of daily living, feelings of social isolation, work and education, and wellbeing.

2.6.

For people who may benefit from support during their assessment, for example to help describe their symptoms, include a family member or carer in discussions if the person agrees.

2.7.

Do not predict whether a person is likely to develop post-COVID-19 syndrome based on whether they had certain symptoms (or clusters of symptoms) or were in hospital during acute COVID-19.

2.8.

When investigating possible causes of a gradual decline, deconditioning, worsening frailty or dementia, or loss of interest in eating and drinking in older people, bear in mind that these can be signs of ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome.

2.9.

If the person reports new cognitive symptoms, use a validated screening tool to measure any impairment and impact.

3. Investigations and referral

These recommendations are for healthcare professionals carrying out initial investigations in primary care or community services for people with new or ongoing symptoms 4 weeks or more after the start of suspected or confirmed acute COVID-19.

3.1.

Refer people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome urgently to the relevant acute services if they have signs or symptoms that could be caused by an acute or life-threatening complication, including (but not limited to):

• severe hypoxaemia or oxygen desaturation on exercise
• signs of severe lung disease
• cardiac chest pain
• multisystem inflammatory syndrome (in children).

3.2.

Offer tests and investigations tailored to people’s signs and symptoms to rule out acute or life-threatening complications and find out if symptoms are likely to be caused by ongoing symptomatic COVID-19, post-COVID-19 syndrome or could be a new, unrelated diagnosis.

3.3.

If another diagnosis unrelated to COVID-19 is suspected, offer investigations and referral in line with relevant national or local guidance.

3.4.

Offer blood tests, which may include a full blood count, kidney and liver function tests, C-reactive protein test, ferritin, B-type natriuretic peptide (BNP) and thyroid function tests.

3.5.

If appropriate, offer an exercise tolerance test suited to the person’s ability (for example the 1-minute sit-to-stand test). During the exercise test, record level of breathlessness, heart rate and oxygen saturation. Follow an appropriate protocol to carry out the test safely (see the rationale section on investigations and referral for suggested protocols). For advice on sharing skills between services to help community services manage these assessments, see the recommendation on sharing skills and training in the section on service organisation.

3.6.

For people with postural symptoms, for example palpitations or dizziness on standing, carry out lying and standing blood pressure and heart rate recordings (3-minute active stand test, or 10 minutes if you suspect postural tachycardia syndrome, or other forms of autonomic dysfunction).

3.7.

Offer a chest X-ray by 12 weeks after acute COVID-19 if the person has not already had one and they have continuing respiratory symptoms. Chest X-ray appearances alone should not determine the need for referral for further care. Be aware that a plain chest X-ray may not be sufficient to rule out lung disease.

3.8.

Refer people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome urgently for psychiatric assessment if they have severe psychiatric symptoms or are at risk of self-harm or suicide.

3.9.

Follow relevant national or local guidelines on referral for people who have anxiety and mood disorders or other psychiatric symptoms. Consider referral:

• for psychological therapies if they have common mental health symptoms, such as symptoms of mild anxiety and mild depression or
• to a liaison psychiatry service if they have more complex needs (especially if they have a complex physical and mental health presentation).

3.10.

After ruling out acute or life-threatening complications and alternative diagnoses, consider referring people to an integrated multidisciplinary assessment service (if available) any time from 4 weeks after the start of acute COVID-19.

3.11.

Do not exclude people from referral to a multidisciplinary assessment service or for further investigations or specialist input based on the absence of a positive SARS-CoV-2 test (PCR, antigen or antibody).

4. Planning care

These recommendations are for healthcare professionals caring for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome who have been assessed in primary care or a multidisciplinary assessment service.

4.1.

After the holistic assessment, use shared decision making to discuss and agree with the person (and their family or carers, if appropriate) what support and rehabilitation they need and how this will be provided. This should include:

• advice on self-management, with the option of supported self-management (see the section on self-management and supported self-management) and
• one of the following, depending on clinical need and local pathways:

  –

  support from integrated and coordinated primary care, community, rehabilitation and mental health services

  –

  referral to an integrated multidisciplinary assessment service

  –

  referral to specialist care for specific complications.

4.2.

When discussing with the person the appropriate level of support and management:

• think about the overall impact their symptoms are having on their life, even if each individual symptom alone may not warrant referral
• look at the overall trajectory of their symptoms, taking into account that symptoms often fluctuate and recur so they might need different levels of support at different times.

5. Management

These recommendations are for healthcare professionals providing care for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome in primary care and community settings or in multidisciplinary assessment and rehabilitation services.

6. Follow-up and monitoring

These recommendations are for healthcare professionals providing care for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome in any setting, including primary care and community settings, secondary care and rehabilitation services.

6.1.

Agree with the person how often follow-up and monitoring are needed and which healthcare professionals should be involved. Take into account the person’s level of need and the services involved.

6.2.

Using shared decision making, offer people the option of monitoring in person or remotely depending on availability, the person’s preference and whether it is clinically suitable for them.

6.3.

Tailor monitoring to people’s symptoms and discuss any changes, including new or worsening symptoms and the effects of these on the person’s life and wellbeing.

6.4.

Consider supported self-monitoring at home, for example heart rate and blood pressure and pulse oximetry, if this is agreed as part of the person’s assessment. Ensure that people have clear instructions and parameters for when to seek further help.

6.5.

Be alert to symptoms developing that could mean referral or investigation is needed, following recommendations in the section on assessing people with new or ongoing symptoms after acute COVID-19.

7. Sharing information and continuity of care

7.1.

Ensure effective information sharing and integrated working by sharing clinical records and care and rehabilitation plans promptly between services and through multidisciplinary meetings, either virtual or in person.

7.2.

Give people a copy of their care plans or records to keep, including their discharge letters, clinical records and rehabilitation plans and prescriptions.

7.3.

Include baseline measures as well as ongoing assessments in information shared between services, including when the person is discharged from hospital. For example, resting oxygen saturation and heart rate, and the results of functional assessment.

7.4.

Provide continuity of care with the same healthcare professional or team as much as possible, for example, by providing a care coordinator or a single point of contact.

8. Service organisation

8.1.

Provide access to multidisciplinary services (these could be ‘one-stop’ clinics) for assessing physical and mental health symptoms and carrying out further tests and investigations. They should be led by a doctor with relevant skills and experience and appropriate specialist support, taking into account the variety of presenting symptoms.

8.2.

Provide integrated, multidisciplinary rehabilitation services, based on local need and resources. Healthcare professionals should have a range of specialist skills, with expertise in treating fatigue and respiratory symptoms (including breathlessness). Additional expertise may be needed depending on the age and symptoms of the person. The core team could include, but not be limited to, the following specialist areas:

• occupational therapy
• physiotherapy
• clinical psychology and psychiatry
• rehabilitation medicine.

8.3.

Share knowledge, skills and training between services to help practitioners in the community provide assessments and interventions, such as 1-minute sit-to-stand tests and breathlessness training.

8.4.

Agree local, integrated referral pathways between primary and community care, multidisciplinary rehabilitation services and specialist services, multidisciplinary assessment clinics and specialist mental health services.

Common symptoms of ongoing symptomatic COVID-19 and post-COVID-19 syndrome

Symptoms after acute COVID-19 are highly variable and wide ranging. The most commonly reported symptoms include (but are not limited to) the following.

Recommendations for research

Rationales

Management

Recommendations 5.1 to 5.8

Follow-up and monitoring

Recommendations 6.1 to 6.5

Sharing information and continuity of care

Recommendations 7.1 to 7.4

Service organisation

Recommendations 8.1 to 8.4

Your responsibility: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.