COVID-19 rapid guideline: managing the long-term effects of COVID-19 (NG188)

Relative value of different outcomes

The expert panel would have expected to see outcomes of investigations carried out to rule out other diagnoses or confirm post-COVID-19 syndrome or dual diagnoses. As the evidence was indirect for this question, the panel were unable to draw conclusions from this evidence. However, they were able to identify the most commonly used tests in the literature during follow-up from acute COVID-19 and determine where abnormalities were often seen in these cohorts of people.

Quality of the evidence

The overall certainty in the evidence was very low. The study designs were limited to mainly cohort studies. Whilst this was expected in terms of SARS-CoV-2 being a novel virus, it means that the data is limited and unlikely to lead to any firm conclusions at this point in time. The aims of the studies did not directly answer the question on which investigations to carry out in people with ongoing symptoms. The panel were also particularly concerned with the generalisability of the evidence. They acknowledged that most of the participants recruited were previously hospitalised with acute COVID-19 and some of the results of the investigations carried out would be reflective of this. The panel also considered that the type of investigations carried out in the literature were more likely to be carried out in secondary care settings.

In addition to this, the panel considered that comorbidities and history of related illness were important in understanding the outcomes of investigations but these were not consistently reported across the studies. The panel highlighted that the quantitative evidence often excluded children and older people and were unable to extrapolate the evidence for these groups of people.

Trade-off between benefits and harms

The panel were minded that when carrying out investigations for ongoing symptoms following acute COVID-19, it was important that other potential diagnoses are not ignored whilst trying to determine if the symptoms are due to post-COVID-19 syndrome. The panel suggested that it would be useful to carry out blood tests that are commonly carried out to rule out or confirm other conditions. They also considered that people might not associate their symptoms with COVID-19, particularly if another event, for example, a stroke, has happened since. The panel were also aware that people might not always present in a typical way, which may particularly be the case with older adults and children. For these reasons, the panel agreed with the conclusions from D’Cruz 2020 that a holistic and preferably face to face assessment is very important from both a clinical and patient perspective. If a clinician can see the patient, then they may identify concerns that the patient may not be aware of themself and may not have reported in a telephone consultation for example.

Blood tests, chest X-rays and exercise tolerance tests, e.g. sit-to-stand test were the most commonly reported tests in the evidence. The panel considered that these tests would be useful for most people as investigations and to obtain baseline measures. The panel however agreed that clinical judgment would be needed for exercise tolerance tests because it could be harmful to some people (for example, people with chest pain or severe fatigue). The evidence showed that chest X-ray may be a poor marker of improvement so the panel suggested it should only be used to inform a holistic assessment on further care needs.

Implementation and resource considerations

The panel were concerned that some of the investigations reported in the literature were unlikely to be readily available everywhere. For example, spirometry currently has a long waiting list in the UK, due to it being an aerosol-generating procedure and therefore fewer tests are being carried out. Many of the tests in the literature are generally not carried out in primary care so the panel agreed it is important to consider the setting, availability and resources needed to carry out investigations. The panel had concerns about further over-loading both primary and secondary care clinicians. The evidence suggests that a face-to-face consultation is preferable, but this is currently difficult in the pandemic setting.

Other considerations

The panel agreed that it would be difficult to do a full examination and fully comprehensive history for a patient, especially considering the time constraints. However, they concluded that a full examination, including clinical history was very important. The panel emphasised the need to focus the examination on both what was appropriate to the patient and their symptoms and what matters most to the patient. The panel also highlighted that in their experience there are people who have had mild symptoms of COVID-19 and not realised, then later develop new symptoms. This also supports the need for taking a full history.

The panel did not think a specific battery of tests should be carried out in patients presenting with ongoing symptoms as this might include tests that will not affect how the patient is managed as well as being time and resource intensive. In addition, the evidence reviewed did not provide conclusive information on a battery of tests that should be conducted for this population. Instead, the panel considered that investigations should be focused on what a patient presents with, covering any ‘red flags’ that require urgent referral, as well as picking up on any ‘pink flags’ which would be less critical, but cumulatively would be causing significant problems for the patient. These tests should include assessment of cognitive, psychological, and psychiatric symptoms, as well as any physical assessments. As the panel were unable to recommend specific screening tools to be used in these assessments, they suggested research recommendations to determine which tools are the most useful. These research recommendations are outlined in the guideline.

The panel were aware from their experience that postural symptoms are common in people with ongoing symptoms of COVID-19 and therefore should be investigated.

The panel experience was consistent with the patient lived experience evidence. Patient data and consensus asserted that people feel more reassured when investigations are carried out. However, the panel were also mindful that some investigations could be anxiety-inducing. For example, some panel members reported that some patients are being asked to record pulse-oximetry readings at home. These readings can fluctuate and therefore cause a patient to worry unnecessarily.

The patient lived experience evidence indicated that having someone in a supportive role who could co-ordinate and guide investigations would be beneficial. The panel concluded that whilst such investigations are important, clinicians should ensure that people have clear instructions and know who to contact for support if needed.