Rationales

Rationale for terms used in the guideline

When developing the terms used in this guideline, many different factors were taken into account. The aim was to reduce the existing confusion about how to define the disease for clinical guidance. The panel recognised the significant progress made by patient groups using the term 'long COVID'. However, the term 'long COVID' has been used in multiple ways across the literature. Other terms have also been used. Greenhalgh et. al (2020) uses the terms 'post-acute COVID‑19' (from 3 to 12 weeks) and 'chronic COVID‑19' for symptoms extending beyond 12 weeks. The National Institute for Health Research themed review notes the possibility of a number of different syndromes.

The evidence on and pros and cons of different terms were reviewed. Specific clinical diagnostic criteria were needed to facilitate access to support, provide the basis for planning services and to enable formal codes to be developed for clinical datasets. Three definitions were developed: acute COVID-19 (0 to 4 weeks), ongoing symptomatic COVID‑19 (4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or longer).

In deciding these time periods, the panel were aware of evidence showing that most people's symptoms will resolve before 12 weeks from the start of acute COVID‑19 while for a smaller proportion of people they will continue for longer. People may also develop signs or symptoms of a life‑threatening complication at any time and these need to be investigated urgently.

The panel concluded that most people who have symptoms or had a positive COVID‑19 test would no longer be self‑isolating after 4 weeks and could be investigated for ongoing symptomatic COVID‑19 (4 to 12 weeks) with the possibility of later being diagnosed with post‑COVID‑19 syndrome (12 or more weeks).

There is currently no long-term evidence base to help determine how long the ongoing effects currently seen after a SARS‑CoV‑2 infection will last. The term 'post' COVID-19 syndrome was agreed to reflect that the acute phase of the illness has ended, not that the person has recovered. Because it is not clear how long symptoms may last the panel agreed that time-specific terms such as 'chronic' or 'persistent' were not appropriate. 'Syndrome' was agreed to reflect the 'running together' or concurrence of the multisystem, fluctuating and often overlapping 'clusters' of symptoms that people present with.

SNOMED CT codes

For the purposes of this guideline the following SNOMED CT codes have been developed, shown as Preferred term (ConceptId):

  • Acute COVID-19 infection (1325171000000109)

  • Ongoing symptomatic COVID-19 (1325181000000106)

  • Post-COVID-19 syndrome (1325161000000102)

SNOMED CT is the standard clinical terminology for the NHS to support recording of clinical information. This supports data management and analysis to support patient care, while enabling data extraction and data exchange.

Return to terms used in the guideline

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

Recommendations 1.1 to 1.10

Why we made the recommendations

People need good information after acute COVID-19 so they know what to expect and when to ask for more medical advice. This could help to relieve anxiety if people do not recover in the way they expect. Evidence from patient experience and the panel's own experiences supported this, particularly because symptoms can fluctuate and there are so many different symptoms reported. Information may be provided by GPs or community services, or by secondary care for people who were in hospital. Accessibility of information is a legal requirement and is particularly important after acute COVID‑19 because people may have cognitive symptoms ('brain fog') or fatigue, making it difficult for them to take in long or complex information.

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 expert panel agreed that an initial consultation would help identify people who need further assessment. Some screening questionnaires are being used in practice, but none are validated for this use. Questionnaires can be useful during the initial consultation but the panel did not want them to be used on their own to decide if further assessment is needed. Examples of questionnaires include the Yorkshire rehab questionnaire and the Newcastle screening tool (see appendix B), recommended by NHS England. Questionnaires should ideally be developed in partnership with patients and be validated.

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.

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.

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.

Return to recommendations

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

Recommendations 2.1 to 2.9

Why we made the recommendations

The evidence suggested that healthcare professionals should use a holistic approach to assessment and the panel agreed assessment should cover both symptoms and how they affect the person overall. Evidence from patient experience showed many people feel their symptoms are not taken seriously. There are also people who don't realise that their symptoms are connected with COVID‑19, so taking time to listen, showing empathy, taking a careful history and making an assessment are important.

The panel wanted to raise awareness about people who may have less common symptoms, particularly older people. They also highlighted the value of talking to family members or carers, with the person's agreement, to help get a full clinical picture for people who need extra support with communication.

There were too many uncertainties in the evidence to provide any symptoms that could predict whether people might develop post‑COVID19 syndrome. The panel also did not want healthcare professionals to assume that people who had been hospitalised were more likely to develop post‑COVID‑19 syndrome because, at the moment, the evidence and the panel's own experience do not support this.

Many people experience cognitive symptoms, such as 'brain fog', confusion and loss of memory. The panel agreed that validated screening tools are useful for measuring and monitoring any impairment and the impact of this. The panel were aware of several tools but were unable to recommend any specifically because the evidence was not reviewed. They also agreed that the type of tool will differ depending on the setting and level of assessment needed.

Investigations and referral

Recommendations 3.1 to 3.11

Why we made the recommendations

Investigations are important to identify symptoms that could be caused by an acute or life-threatening complication, and to assess for other underlying conditions and complications. The panel agreed that no one set of investigations and tests would be suitable for everyone because of the wide range of symptoms and severity. Investigations need to be tailored to the person's signs and symptoms and whether they are being assessed in primary or secondary care. They agreed that blood tests and exercise tolerance tests (if safe and appropriate for the person) would be useful for most people as investigations and baseline measures, and could be carried out in primary care. These were also the tests most commonly reported in the evidence, along with chest X-rays. The panel suggested some blood tests, such as a full blood count and kidney, liver and thyroid function tests, that are commonly carried out to help rule out (or confirm and treat) other conditions.

The evidence suggested that not all pathology shows up on a chest X-ray so the panel agreed it should only be used as part of a holistic assessment to decide if referral or further care are needed in people with respiratory symptoms.

The panel discussed the usefulness of carrying out a sit‑to‑stand test but also agreed clinical judgement would be needed because it is not suitable for everyone (for example, people with chest pain or severe fatigue). They agreed skill sharing between services could help with gaps in knowledge and that a protocol should be followed in order to carry a sit‑to‑stand test out safely. The panel discussed that appropriate protocols could be found in these studies: Ozalevli S, Ozden A, and Akkoclu A (2007) Comparison of the sit-to-stand test with 6 min walk test in patients with chronic obstructive pulmonary disease and Briand J, Behal H, Chenivesse C et al. (2018) The 1-minute sit-to-stand test to detect exercise-induced oxygen desaturation in patients with interstitial lung disease. They could not recommend any one in particular as their effectiveness had not been reviewed.

Postural symptoms are common, so the panel agreed that these should be investigated by taking lying and standing blood pressure and heart rate. Advice on carrying this out is available from the Royal College of Physicians' brief guide on measuring lying and standing blood pressure.

Evidence suggested that many people struggle to adjust to changes in their life, abilities and self-identity and reported feelings of helplessness and isolation. This was also supported by expert testimony, which suggested that symptoms of low mood and anxiety are common. The panel agreed that when mental health symptoms are identified during assessment, people need to be referred for support in line with relevant guidance (see the Royal College of Psychiatrists' position statement [2019] The role of liaison psychiatry in integrated physical and mental healthcare).

The patient experience evidence described how some people were not offered tests and other people were refused a referral by healthcare professionals because they did not have a positive SARS‑CoV‑2 test result. Many people who had acute COVID‑19 were not tested, particularly earlier in the pandemic. The panel were clear that access to services should not be restricted by the need for a positive SARS‑CoV‑2 test (PCR, antigen or antibody).

Return to recommendations

Planning care

Recommendations 4.1 and 4.2

Why we made the recommendations

There was not enough evidence to recommend specific criteria for referral and the panel agreed the right level of care would be agreed in shared decision making with the person after their holistic assessment. To ensure people get the right care and support, a tiered approach could be used in which everyone gets advice for self‑management, with the additional option of supported self‑management if needed. People can then also be offered care from different services to match the level of their needs.

For many people with ongoing symptomatic COVID‑19 and post‑COVID‑19 syndrome, this will mean referral to an integrated multidisciplinary assessment service for investigation, support to manage their symptoms and rehabilitation. Prompt referral is needed to avoid delays in getting people the support they need. In the panel's experience, the earlier people received help the more effective the interventions. The panel were also concerned that a lack of support could negatively affect people's mental health. They agreed that referral should be offered to those who would benefit from these services from 4 weeks after the start of acute COVID‑19.

Return to recommendations

Management

Recommendations 5.1 to 5.8

Why we made the recommendations

There was very little evidence on interventions, but the panel agreed that everyone should have self‑management support and information. There was a lack of COVID‑19‑specific evidence on managing many of the common symptoms related to COVID‑19, such as fatigue, dizziness and cognitive problems (such as 'brain fog'), but the panel agreed that support, such as setting achievable goals, should be tailored to the person's needs.

Patient organisations and online support groups can help to support self‑management. NHS website Your COVID recovery was also 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 had been investigated that could affect the safety of rehabilitation. Physical, psychological and psychiatric aspects of rehabilitation should be addressed, with fatigue management being 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.

A personalised rehabilitation and management plan records the person's needs and how they will be met. In some settings a 'rehabilitation prescription' may be used to capture this information. The rehabilitation prescription is held by the person and includes an individualised description of rehabilitation needs or recommendations to inform the future planning and delivery of a person's ongoing rehabilitation. Based on their experience, the panel agreed on the value of symptom diaries and symptom tracking apps in self-monitoring. The evidence for different symptom tracking apps was not reviewed so the panel could not recommend a specific product.

There was a lack of evidence on specific age groups in relation to ongoing symptomatic COVID‑19 or post‑COVID‑19 syndrome, so the panel made recommendations for children and older people based on their clinical experience.

Return to recommendations

Follow-up and monitoring

Recommendations 6.1 to 6.5

Why we made the recommendations

There was a lack of evidence on monitoring, but the panel agreed it is important so that people's support can be adapted if their symptoms or ability to carry out their usual activities change. The patient experience evidence highlighted the importance of follow-up and 'check ins' to access further care. The panel did not want to limit monitoring to specific tests or symptoms, or to a particular timeframe, because people with ongoing symptomatic COVID‑19 and post‑COVID19 syndrome have such a wide range of care needs. They decided it should be tailored to each person.

In the panel's experience, self-monitoring at home can be useful and is used in practice. But it might not be suitable for everyone, and without the right information and support can cause unnecessary anxiety. People need good guidance to use equipment, interpret the results and understand when to contact a healthcare professional.

The evidence on when to refer was also limited and based mostly on people who had been hospitalised, so it was not relevant to everyone. The panel agreed that healthcare professionals should be alert to any changes and that the recommendations in the assessment section would also apply to monitoring.

Return to recommendations

Sharing information and continuity of care

Recommendations 7.1 to 7.4

Why we made the recommendations

There was evidence that people struggled to access appropriate care and some had experienced fragmented care. The panel agreed on the need to improve integration and coordination of care across different services. Having regular multidisciplinary meetings would help share information more efficiently and allow professionals to make decisions quickly about tests and referral. Sharing clinical records and care plans between services, with the agreement of the person, will help healthcare professionals provide integrated care, and avoid gaps in care or duplication of effort. In particular, sharing baseline measures is essential for monitoring as people move between services. The panel wanted to make sure that information is also shared with people using services so that they know what is happening with their care. The patient experience evidence also described how people could benefit from continuity of care, and the panel agreed this should always be an aim for well-integrated services.

Return to recommendations

Service organisation

Recommendations 8.1 to 8.4

Why we made the recommendations

The limited evidence described different models of rehabilitation 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 clear referral pathways can prevent disjointed care and people waiting a long time for appointments with multiple specialists. This was supported by the patient experience evidence, which described the challenges of getting support for such a wide range of symptoms and a lack of coordinated care.

The panel agreed the core expertise that a multidisciplinary team could include. Because symptoms are so wide ranging, many other areas of expertise could also be added as needed, for example rheumatology, neurology rehabilitation, cardiology, paediatrics, dietetics, speech and language therapy, nursing and pharmacy.

Different regional and geographical challenges mean that areas have different service needs and resources, so the panel agreed that one model would not fit all areas. However, the panel agreed a multidisciplinary service for assessment could avoid multiple referrals and would provide a single point for care. This could be a 'one-stop' clinic to help keep appointments to a minimum, although this might not be feasible for all services or wanted by all patients.

Based on their experience, the panel wanted to encourage different services to share knowledge and expertise with each other, to help expand the choice of tests and interventions available in the community. This could be done through local clinical networks or clinical hubs.

Return to recommendations

ISBN: 978-1-4731-3943-5