First guidance on diagnosing and managing 'long COVID' published by NICE, SIGN and RCGP

GPs should proactively follow up all high-risk or vulnerable patients who have had a suspected or confirmed case of COVID-19 to ensure they have access to appropriate care, according to the first clinical guideline on long COVID.

Patients with long COVID can suffer from fatigue (Photo: Westend61/Getty Images)
Patients with long COVID can suffer from fatigue (Photo: Westend61/Getty Images)

The guideline - published by NICE, SIGN and the RCGP - also says GPs should consider referring patients with long COVID to specialist multidisciplinary services as early as four weeks after acute infection, with referral based on the impact symptoms are having on patients' lives.

It divides long COVID into two clinical definitions. Patients still experiencing symptoms of COVID-19 between four and 12 weeks post infection may have 'ongoing symptomatic COVID-19', while those whose symptoms persist after 12 weeks may have 'post-COVID-19 syndrome', the guidance says.

Alongside advice on diagnosis and management, the guidance recommends that GPs should proactively follow-up all people in vulnerable or high-risk groups who have self-managed a suspected or confirmed case of COVID-19, to ensure they have access to appropriate care and the risks of complications are minimised.

Recent data from the COVID Symptom Study app, run in partnership with King's College London, suggests that one in 20 people are likely to suffer from COVID-19 symptoms lasting more than eight weeks.

At present little is understood about why some people experience long COVID. This latest guidance has made wide-ranging recommendations about research that should be undertaken to help better understand the condition, how it affects different groups and any treatments that might be effective. It also says that a validated screening tool should be developed.

Diagnosing long COVID

The guidance says that developing either form of long COVID is 'not thought' to be linked to the severity of a patient's case of acute COVID-19, including whether they were admitted to hospital.

GPs should consider post-COVID-19 syndrome in patients where symptoms develop during or after an infection with the coronavirus, continue for more than 12 weeks and are not explained by an alternative diagnosis.

The condition 'usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body', the guidance adds. It provides a list of the common symptoms associated with long COVID (see box below).

The guidance says that anyone who has concerns about new or ongoing symptoms four weeks after COVID-19 infection should be offered a consultation, either face to face or remotely. It said that evidence 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,' it added.

Investigations and referrals

The guidance says GPs should be aware that some people, including older people and children, may not experience the most common symptoms associated with long COVID. GPs should also bear in mind that worsening frailty or dementia, gradual decline and loss of interest in eating and drinking in older people could all be signs of ongoing symptomatic COVID-19 or post-COVID-19 syndrome.

NICE, SIGN and the RCGP recommend that all patients who have experienced acute COVID-19 should be provided with information about their expected recovery and when they should seek further medical help. 'This could help to relieve anxiety if people do not recover in the way they expect,' they said.

The guidance also says that GPs should offer tests and investigations relevant to people's symptoms to rule out other diagnoses. 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' should be offered and an exercise tolerance test should be undertaken, if appropriate.

GPs are recommended to refer patients with continuing respiratory symptoms 12-weeks post-infection for a chest X-ray if they have not already had one.

Patients with anxiety or 'other psychiatric symptoms' should be considered for referral for psychological therapies. Meanwhile, those with severe psychiatric symptoms or who are at risk from self harm should be referred urgently for a psychiatric assessment.

Patients should be referred to specialist multidisciplinary teams if they are available from as early as four weeks post infection. 'Prompt referral is needed to avoid delays in getting people the support they need,' the guidance said. '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.'

NHS England has said there are now 69 clinics dedicated to assessing and supporting patients with long COVID around the country.

Managing long COVID

In terms of management the guidance advises GPs to provide patients with advice and information on how they can self manage their symptoms. They should also provide any relevant information about local support groups, social prescribing and online forums and apps.

It adds that there is no evidence that vitamins and supplements can help to alleviate ongoing symptoms.

Any plans for monitoring patients should be tailored to the symptoms they are experiencing. The guidance advises that self monitoring of heart rate, blood pressure and pulse oximetry may be appropriate in some cases.

RCGP chair Professor Martin Marshall, said: 'The college has been delighted to work with NICE and SIGN to develop these clinical guidelines. We hope they will be useful for GPs and other healthcare professionals and will have a positive impact on the care delivered to patients with prolonged symptoms of COVID-19. We’ve also produced a booklet for patients to help them understand their illness.

'It’s been a rapid but rigorous process, during which we have listened to both clinicians and patients who have had ongoing symptoms as a result of COVID-19 to ensure the guidance is as holistic and comprehensive as possible given what we know. COVID-19 is a new virus, and long-COVID a new illness, so this is just a starting point and as more research is done and new evidence emerges, these guidelines will be updated.'

Common symptoms of ongoing symptomatic COVID-19 and post-COVID-19 syndrome

Respiratory

  • Breathlessness
  • Cough

Cardiovascular

  • Chest tightness
  • Chest pain
  • Palpitations

Generalised symptoms

  • Fatigue
  • Fever
  • Pain

Neurological 

  • Cognitive impairment (‘brain fog’, loss of concentration or memory issues)
  • Headache
  • Sleep disturbance
  • Peripheral neuropathy symptoms (pins and needles and numbness)
  • Dizziness
  • Delirium (in older populations)

Gastrointestinal

  • Abdominal pain
  • Nausea
  • Diarrhoea
  • Anorexia and reduced appetite (in older populations)

Musculoskeletal

  • Joint pain
  • Muscle pain

Psychological/psychiatric

  • Symptoms of depression
  • Symptoms of anxiety

Ear, nose and throat

  • Tinnitus
  • Earache
  • Sore throat
  • Dizziness
  • Loss of taste and/or smell

Dermatological

  • Skin rashes
Source: NICE, SIGN, RCGP: COVID-19 rapid guideline: managing the long-term effects of COVID-19

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