COVID-19 rapid guideline: managing the long-term effects of COVID-19

Common symptoms of ‘long COVID’

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

• 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
  • 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
• 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 4–12 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 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
• 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
• 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
• 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
• 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
• 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.

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

• 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 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
• Be aware that people can have wide-ranging and fluctuating symptoms after acute COVID-19, which can change in nature over time
• 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
• 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
• 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
• If the person reports new cognitive symptoms, use a validated screening tool to measure any impairment and impact.

Investigation and referral

• 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)
• 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
• If another diagnosis unrelated to COVID-19 is suspected, offer investigations and referral in line with relevant national or local guidance
• 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
• 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)
• 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
• 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 integrated multidisciplinary assessment service (if available) any time from 4 weeks after the start of acute COVID-19
• 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).

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 (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
• 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

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 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
• 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 symptoms of COVID-19
• Support people in discussions with their employer, school or college about returning to work or education, 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.

Multi-disciplinary rehabilitation

• Assess people who have been referred to integrated multidisciplinary rehabilitation services to guide management. Include physical, psychological and psychiatric aspects of rehabilitation. Ensure that any symptoms that could affect the person being able to start rehabilitation safely have been investigated first
• Work with the person 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
  • symptom management for all presenting symptoms, for example advice and education on managing breathlessness, fatigue and ‘brain fog’
• Encourage people to keep a record of, or use a tracking app to monitor, their goals, recovery and any changes in their symptoms.

Support for older people and children

• Consider additional support for older people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome, for example 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 and monitoring

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

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.