Managing the long term effects of covid-19: summary of NICE, SIGN, and RCGP rapid guideline

Definitions

The guideline defines acute covid-19, ongoing symptomatic covid-19, and post-covid-19 syndrome, according to duration of symptoms. The guideline acknowledges common usage of “long covid,” but the panel felt discrete, time-bound terms would better facilitate access to support, provide the basis for service planning, and enable clinical datasets to be established for monitoring and research. Box 1 gives definitions.

Identifying people with ongoing symptomatic covid-19 or post-covid-19 syndrome

The guideline makes recommendations 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 (polymerase chain reaction, antigen, or antibody). The guideline emphasises providing information to empower people to understand their symptoms, and to recognise when to seek help.

• 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

  • 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 people in different ways at different times

  • how to self-manage ongoing symptomatic covid-19 or post-covid-19 syndrome

  • 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 four weeks after the start of acute covid-19.

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

Support people in underserved or vulnerable groups to access assessment and care by (for example) raising awareness about the long term effects of covid-19, and providing extra time or additional support (such as an interpreter or advocate) during consultations. Consider follow-up for people in vulnerable groups who have self-managed in the community after suspected or confirmed acute covid-19.

Assessing people with new or ongoing symptoms after acute covid-19

The most common symptoms are fatigue and breathlessness. Other possible symptoms are listed in box 2. Symptoms may be singular, multiple, constant, transient, or fluctuating, and can change in nature over time. Assessment should include physical, cognitive, psychological, and psychiatric symptoms, as well as functional abilities.

• 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.

• 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.

• 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.

• 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.

• 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.

Investigation and referral

Covid-19 may cause complications such as myocarditis and postural hypotension. However, not all symptoms will be related to covid-19. Investigations serve to rule out serious or urgent complications, evaluate symptoms secondary to ongoing symptomatic covid-19 or post-covid-19 syndrome, or to look for new, unrelated diagnoses. No one set of investigations and tests would be suitable for everyone because of the wide range of symptoms and severity.

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

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

• 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.

• 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).

• 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).

• 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 four weeks after the start of acute covid-19.

Planning care

• 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, 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.

• 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.

Management

The guideline offers an overview of self-management and supported self-management. Patient organisations and online support groups can help support self-management.

• Give advice and information on self-management to people with ongoing symptomatic covid-19 or post-covid-19 syndrome, starting from their initial assessment. This should include:

  • ways to self-manage their symptoms, such as setting realistic goals

  • who to contact if they are worried about their symptoms or they need support with self-management

  • sources of advice and support, including support groups, social prescribing, online forums, and apps

  • how to get support from other services, including social care, housing, and employment, and advice about financial support

  • information about new or continuing symptoms of covid-19 that the person can share with their family, carers, and friends.

• Support people in discussions with their employer, school, or college about returning to work or education, for example by having a phased return.

Based on their experience, the guideline panel agreed that symptom diaries and symptom tracking apps can be helpful for self-monitoring. The evidence for different symptom tracking apps was not reviewed, so the panel could not recommend a specific product. The NHS website “Your COVID Recovery”4 was highlighted as a potential source of reliable, up-to-date information and support.

The panel agreed that multidisciplinary rehabilitation teams should work with people to make a plan for their rehabilitation once any symptoms that could affect the safety of rehabilitation have been investigated. Physical, psychological, and psychiatric aspects of rehabilitation should be addressed, and management of fatigue should be a key component of this. The evidence showed that breathlessness, fatigue, and “brain fog” are among the most commonly reported long term symptoms, so support for these should be part of the person’s rehabilitation plan.

Follow-up and monitoring

• Agree with the person how often follow-up and monitoring are needed and which healthcare professionals should be involved.

• 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.

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

Sharing information and continuity of care

The panel found evidence that some people have struggled to access appropriate care, and some had experienced fragmented care.

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

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

• 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.

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

Service organisation

The guideline makes recommendations about the provision of, and access to multidisciplinary services. The panel agreed that some of the common elements, such as integration and multidisciplinary team working, would help provide effective, well organised care for people with ongoing symptomatic covid-19 and post-covid-19 syndrome. As well as ensuring the right breadth of expertise, having a multidisciplinary team with input from other services and a clear referral pathways can prevent disjointed care and people waiting a long time for appointments with multiple specialists.

Differential access may be affected, for example, by age, race, disability, homelessness, language, digital accessibility, socioeconomic factors, and mental health conditions.

• Deploy multidisciplinary clinics (possibly using the “one-stop” clinic model) to assess physical and mental health symptoms and to conduct appropriate investigations.

• For rehabilitation, supply an integrated, multidisciplinary service, based on local need and resources. A range of specialists should be available, especially for expertise in treating fatigue and respiratory symptoms (including breathlessness); additional expertise may be sourced depending on the age and symptoms of the person.

• To ensure seamless care, referral pathways need to be integrated between primary and community care, multidisciplinary rehabilitation services, and specialist services, multidisciplinary assessment clinics, and specialist mental health services.