COVID-19 Rapid Guideline: Managing the Long-Term Effects of COVID-19

Overview

This Guidelines summary covers identifying, assessing, and managing the long-term effects of COVID-19, often described as ‘long COVID’. It makes recommendations for primary care about care for adults, children, and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19.

The 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, the following clinical definitions for the initial illness and long COVID have been used 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 4–12 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

In this summary, the term ‘long COVID’ includes both ongoing symptomatic COVID-19 and post-COVID-19 syndrome definitions.

Common Symptoms of ‘Long COVID’

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

Respiratory Symptoms

• Breathlessness 
• Cough.

Cardiovascular Symptoms

• Chest tightness
• Chest pain
• Palpitations.

Generalised Symptoms

• Fatigue
• Fever
• Pain.

Neurological Symptoms

• Cognitive impairment (‘brain fog’, loss of concentration or memory issues)
• Headache
• Sleep disturbance
• Peripheral neuropathy symptoms (pins and needles and numbness)
• Dizziness
• Delirium (in older populations)
• Mobility impairment
• Visual disturbance.

Gastrointestinal Symptoms

• Abdominal pain
• Nausea
• Diarrhoea
• Weight loss and reduced appetite.

Musculoskeletal Symptoms

• Joint pain
• Muscle pain.

Ear, Nose and Throat Symptoms

• Tinnitus
• Earache
• Sore throat
• Dizziness
• Loss of taste and/or smell
• Nasal congestion.

Dermatological Symptoms

• Skin rashes
• Hair loss.

Psychological/Psychiatric Symptoms

• Symptoms of depression
• Symptoms of anxiety
• Symptoms of post-traumatic stress disorder.

The following symptoms and signs are less commonly reported in children and young people than in adults:

• shortness of breath
• persistent cough
• pain on breathing
• palpitation
• variations in heart rate
• chest pain.

Identification

Use the following clinical case definitions to identify and diagnose the long-term effects of COVID-19:

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 weeks up 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. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.
  
  In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).
• 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 them in different ways at different times
  • how to self-manage ongoing symptomatic COVID-19 or post-COVID-19 syndrome (see the recommendations in the section on self-management and supported self-management)
  • who to contact if they are worried about new, ongoing or worsening symptoms, or if they are struggling to return to education, work or other usual activities, especially if it is more than 4 weeks after the start of acute COVID-19.
• Give people information on COVID-19 vaccines (see NHS information on COVID-19 vaccines). Encourage them to follow current government guidance for vaccination but explain that it is not known if vaccines have any effect on ongoing symptomatic COVID-19 or post-COVID-19 syndrome.
• Provide all information in accessible and age-appropriate 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 guidelines on patient experience in adult NHS services and shared decision making
  • Healthcare Improvement Scotland’s website ‘What Matters To You’
  • NHS England’s Accessible information standard.

New and Ongoing Symptoms After Acute COVID-19

• For people with new or ongoing symptoms after acute COVID-19, suspect:
  • 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.
• For people who are experiencing 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 remote or in person.
• 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.
• Some people (including children and older people) may not have the most commonly reported new or ongoing symptoms after acute COVID-19.
• The following symptoms and signs are less commonly reported in children and young people than in adults:
  • shortness of breath
  • persistent cough
  • pain on breathing
  • palpitations
  • variations in heart rate
  • chest pain.
• In addition to clinical symptoms, people who report increased absence or reduced performance in their education, work or training after acute COVID-19 may have ongoing symptomatic COVID-19 or post-COVID-19 syndrome and may need extra support and recovery time.
• 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.
• People with ongoing symptomatic COVID-19 or post-COVID-19 syndrome who report increased absence or reduced performance in education or work may need extra support and recovery time.

Need for Further Assessment

• 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 remote or in person. Take into account whether they may have symptoms that need investigating in person or require urgent referral to an appropriate service.
• 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 symptomatic COVID-19 or post-COVID-19 syndrome—this may include working with local community leaders or organisations—particularly in vulnerable groups and black, Asian and minority ethnic groups.

Proactive Follow-up After Acute COVID-19

• 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.
• A healthcare professional in secondary care should offer a 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.

Assessment

• 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.
• Include in the comprehensive clinical history:
  • history of acute COVID-19 (suspected or confirmed)
  • 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
  • exacerbation of pre-existing conditions.
• Be aware that people can have wide-ranging and fluctuating symptoms after acute COVID-19, which can change in nature over time (see the section on common symptoms).
• Discuss the person’s experience of their symptoms and how their life and activities have been affected, including work, education, mobility and independence. Ask about any feelings of worry or distress. Listen to their concerns with empathy and acknowledge the impact on their day-to-day life.
• 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.
• 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.
• If the person reports new cognitive symptoms, use a validated screening tool to measure any impairment and impact.

Investigations and Referral

• 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.
• 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
  • paediatric inflammatory multisystem syndrome – temporally associated with SARS-CoV-2 (PIMS-TS).
• If another diagnosis unrelated to COVID-19 is suspected, offer investigations and referral in line with relevant national or local guidance.
• Decisions about blood tests should be guided by the person’s symptoms. If clinically indicated, offer blood tests, which may include a full blood count, kidney and liver function tests, C-reactive protein, ferritin, B-type natriuretic peptide (BNP), HbA_1c and thyroid function tests.
• Consider supported self-monitoring at home, if this is agreed through shared decision making as part of the person’s assessment. This may include heart rate, blood pressure, pulse oximetry or symptom diaries. Ensure that people have clear instructions on how to use any equipment and parameters for when to seek further help.

  Be aware that some pulse oximeters can underestimate or overestimate oxygen saturation levels, especially if the saturation level is borderline. Overestimation has been reported in people with dark skin.

• 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 for orthostatic hypotension, or 10 minutes if you suspect postural tachycardia syndrome, or other forms of orthostatic intolerance).
• Offer a chest X-ray by 12 weeks after acute COVID-19 if the person has continuing respiratory symptoms and it is clinically indicated. 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.
• 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.
• 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).
• After ruling out acute or life-threatening complications and alternative diagnoses, consider referring people to an appropriate service, such as an integrated multidisciplinary assessment service, any time from 4 weeks after the start of acute COVID-19.
• Many people experience a spontaneous improvement in symptoms between 4 and 12 weeks after the start of acute COVID-19 and should be offered self-management support and monitoring during this time, with consideration of onward referral to further services if they do not improve. People with concerning symptoms during this time may need referral for assessment by acute medical services.
• Do not exclude people from referral to an integrated 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) as long as the case definition criteria are met.

For recommendations on planning care, refer to the full guideline.

Management

• There are established treatments for managing the common symptoms often seen with ongoing symptomatic COVID-19 and post-COVID-19 syndrome, as set out in current national and local guidance, which can be followed for symptomatic relief. However, there is a lack of evidence for pharmacological interventions to treat the condition itself.

Self-management and Supported Self-management

• Give advice and information on self-management to people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome, starting from their holistic 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.

    Advice for patients on managing common symptoms is available from the Your COVID Recovery and NHSinform websites.

• Explain to people that it is not known if over-the-counter vitamins and supplements are helpful, harmful or have no effect in the treatment of new or ongoing symptomatic COVID-19 or post-COVID-19 syndrome.
• Support people in discussions with their school, college or employer about returning to education or work, for example by having a phased return. For advice on returning to work, follow national guidance, for example NICE’s guideline on workplace health: long-term sickness absence and capability to work.

Multidisciplinary Rehabilitation

• Use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management. Ensure that any symptoms that could affect the person being able to start rehabilitation safely have been investigated first.
• Work with the person (and their family or carers, if appropriate) to develop a personalised rehabilitation and management plan that is recorded in a rehabilitation prescription and should include:
  • areas of rehabilitation and interventions based on their assessment
  • helping the person to decide and work towards goals
  • how to manage and monitor their symptoms, taking into account that these may fluctuate, and what to do if symptoms return or change.
• Provide extra time or additional support (such as an interpreter or advocate) to people who would benefit during their consultations.
• Encourage people to keep a record of, or use a tracking app to monitor, their goals, recovery and any changes in their symptoms (see also the section on follow up, monitoring and discharge).

Additional Support

• Consider additional support for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome who may be vulnerable, for example, older people and people with complex needs. Additional support may include short-term care packages, advance care planning and support with social isolation, loneliness and bereavement, if relevant.
• Consider referral from 4 weeks for specialist advice for children with ongoing symptomatic COVID-19 or post-COVID-19 syndrome.

Follow Up, Monitoring and Discharge

• Use shared decision making to decide how often follow-up and monitoring are needed, which healthcare professionals should be involved and whether appointments should be carried out in person or remotely. Take into account:
  • the persons needs and the services involved
  • the person’s symptoms, including new or worsening symptoms, and the effects of these on the person’s life and wellbeing
  • availability, clinical suitability and the person’s preferences for in-person or remote appointments.
• Be alert to symptoms developing that could mean referral or investigation is needed, following recommendations in the section on assessment.
• Use shared decision making to discuss and agree plans for discharge from rehabilitation and care, taking into account the person’s preferences, goals and social support. Follow local referral pathways to enable re-referral if needed.

Sharing Information and Continuity of Care

• 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.
• Give people 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 coordinator or a single point of contact.

For recommendations on service organisation, refer to the full guideline.