1 Identification

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). Be aware that both children and adults can be affected by ongoing symptomatic COVID-19.

Case definition

1.1

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). [2021]

To support recording of clinical information and enable data extraction and exchange, codes have been developed that align with the case definition and support diagnosis, management and referral. These can be found in NHS England's national commissioning guidance for post-COVID services, as part of the primary care coding minimum dataset.

The Scottish Government's information support note for clinicians to support the management of the long-term effects of COVID-19 in primary and community care in Scotland provides information on the relevant codes for EMIS PCS and Vision. It also includes targeted information for clinicians and support for healthcare teams, including information and links to resources to support a consistent approach in Scotland to clinical assessment, shared decision making and individualised care planning conversations, including self-management and further referral where needed.

Advice and written information

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.2

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 section 9 on common symptoms)

  • what they might expect during their recovery, including that:

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

    • the likelihood of developing ongoing symptomatic COVID-19 or post-COVID-19 syndrome is not considered 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 fluctuate, affecting them in different ways at different times

  • how to self-manage ongoing symptomatic COVID‑19 or post‑COVID‑19 syndrome (see section 5.1 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.

    For signs or symptoms that could be caused by an acute or life-threatening complication, see recommendation 3.2 on referral. [2020, amended 2021]

1.3

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. [2021]

1.4

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:

New and ongoing symptoms after acute COVID-19

1.5

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. [2020, amended 2021]

1.6

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. [2020, amended 2021]

1.7

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. [2020]

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.

Need for further assessment

1.8

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. [2020, amended 2021]

For advice on working with people to make decisions about their treatment and care, see NICE's guidelines on shared decision making and decision making and mental capacity, and Healthcare Improvement Scotland's 'What Matters To You' website.

1.9

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.

    See the equality impact assessment for more information about the equality issues considered. [2020]

Proactive follow-up after acute COVID-19

1.10

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. [2020]

1.11

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. [2020, amended 2021]