Identification

Managing the long-term effects of COVID-19 (SIGN/NICE/RCGP)
Healthcare Improvement Scotland

Related information: Clinical case definitions

Rationale

Healthcare professionals in all services need to be alert to whether people may need support. Although most people with ongoing symptoms will start to improve between 4 and 12 weeks, some will need further investigation and others will need rehabilitation to help them recover. The panel therefore agreed that ongoing symptomatic COVID-19 and post-COVID-19 syndrome should be considered as part of the differential diagnosis at 4 to 12 weeks and beyond 12 weeks, respectively.

The panel reviewed the evidence on the case definitions for the November 2021 update and agreed that no changes should be made to this recommendation. The panel also emphasised that this recommendation applies to children and young people as well as adults.

The expert panel agreed that an initial consultation would help identify people who need further assessment. A detailed discussion between the person and a healthcare professional is an important part of understanding their symptoms, and the way in which the symptoms affect their daily life. This discussion will form the first part of an assessment, and inform decisions about whether further assessment and investigations are needed (see the section on assessment). The panel also agreed that the format of the consultation should be discussed and agreed with the person according to their needs and preferences and local availability of services.

Some screening questionnaires are being used in practice, but none are validated for this use. Examples of questionnaires include the COVID-19 Yorkshire Rehab Questionnaire, and the Newcastle screening tool, recommended by NHS England. Questionnaires should ideally be developed in partnership with patients and be validated.

The panel reviewed expert testimonies from Nicol 2021, Nuffield Heath 2021 and Locke 2021, provided for the November 2021 update, that supported the recommendation on initial consultation and so the panel agreed that it should be retained.

Recommendation

For people with new or ongoing symptoms after acute COVID-19, suspect:

  • ongoing symptomatic COVID-19 syndrome 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 experiencing 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 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 symptom. These should only be used in conjunction with clinical assessment.

Rationale

In the panel’s experience, some people, including children and older people, may report different symptoms from those most commonly seen in other age groups. The panel highlighted this to make sure their needs are still identified.

For the November 2021 update, the evidence for children and young people was reviewed. The evidence on the most common symptoms and signs in children and young people remains uncertain because of the small number and size of studies and the risk of bias. However, the panel did note that some cardiac and respiratory symptoms were less commonly reported in children than adults and agreed that these symptoms should be noted to inform investigation of alternative diagnoses.

Information Box

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.

Rationale

Based on expert testimony and the panel's experience, the panel agreed that poor performance or increased absence in education, work or training may suggest ongoing symptomatic COVID-19 or post-COVID syndrome. Awareness of this may be helpful to healthcare professionals in identifying people who may need further assessment.

Information Box

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.

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.

Rationale

There was evidence supporting further assessment in person after initial assessment, and the panel agreed this was important to fully assess people who need it. A consultation in person might not be suitable for everyone, so this should be agreed as a shared decision.

Recommendation

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 telephone, 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.
  This content is derived from the Scottish Government's Implementation Support Note. 
It should be recognised that many people may have multiple symptoms, and over time more than one appointment may be needed to assess a person’s physical, psychological and social concerns. Where possible continuity of care, and shared decision making which supports good care planning conversations (and anticipatory care plans where appropriate) will support positive therapeutic relationships, with the GP as the expert medical generalist working with the extended multidisciplinary team to support a person’s management across health and care.

Rationale

The panel agreed on the need to address health inequalities in care for people after acute COVID-19. Some people are less likely to seek help for symptoms or may be at risk of not being followed up after hospital care, for example because of language barriers, mental health conditions, mobility or sensory impairments, a learning disability or cultural differences in seeking help. Providing extra support and raising awareness could improve access to care, as could more proactive follow up of people from underserved or vulnerable groups who are known to have had acute COVID-19 in the community and could be at increased risk of complications.

Recommendation

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.
  This content is derived from the Scottish Government's Implementation Support Note.
Consider the impact of health inequalities and that some people may have difficulty in accessing services and sources of support.
A healthcare professional in secondary care should offer a video or telephone follow-up consultation at six weeks after discharge to people who have been in hospital with acute COVID-19 to check for new or ongoing symptoms or complications.

References

Full details of the evidence and the panel's discussion are in:

Related Resources

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