Dr Claire Davies distils the NICE guideline on managing the long-term effects of COVID-19 into six key learning points for primary care

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Dr Claire Davies

  • assessing patients with long-term symptoms after acute COVID-19 infection
  • investigations that can help to rule out life-threatening symptoms
  • management options and ongoing monitoring of people with long COVID.

Implementation actions for STPs and ICSs

In the early stages of the COVID-19 pandemic, the medical community focused on what appeared to be an acute viral infection with complications of severe respiratory disease. Since then, a large cohort of patients has emerged, with persisting, fluctuating clusters of symptoms, which often overlap and can affect any system in the body, after infection with COVID-19.1 The Office for National Statistics estimated that in November 2020 around 186,000 people in private households in the UK had symptoms that had persisted for 5 to 12 weeks after COVID-19 infection.2

In December 2020, NICE, in collaboration with the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, published NICE Guideline (NG) 188, COVID-19 rapid guideline: managing the long-term effects of COVID-19.1 The guideline covers care in all settings for adults, young people, and children with new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. The guideline also includes definitions for specific terms (see Box 1);1 however, it is worth noting that some of the time periods for the different phases of COVID-19 used in NICE’s definitions are arbitrary and some have expressed disagreement with the way this has been done.3

Box 1: Terms used in the NICE COVID-19 rapid guideline on managing the long-term effects of COVID-191

  • 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 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
  • Long COVID: 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).

© NICE 2020. COVID-19 rapid guideline: managing the long-term effects of COVID-19. Available from: www.nice.org.uk/guidance/ng188 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

1. Recognise the symptoms of long COVID

Symptoms experienced by patients with long COVID are disparate and fluctuating.1 Long COVID is not always a linear disease and can be cyclical with symptoms moving around different body systems and fluctuating in severity, and people experience a wide range of interconnected symptoms that collectively can leave people severely debilitated.4 The symptoms described in NG188 are included in Table 1; however, this list is not exhaustive.1

Table 1: Symptoms of long COVID1
System/groupSymptoms

Respiratory

  • Breathlessness
  • Cough

Cardiovascular

  • Chest tightness
  • Chest pain
  • Palpitations

Generalised symptoms

  • Fatigue
  • Fever
  • Pain

Neurological

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

Gastrointestinal

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

Musculoskeletal

  • Joint pain
  • Muscle pain

Psychological/psychiatric

  • Symptoms of depression
  • Symptoms of anxiety

Ear, nose, and throat

 

 

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

Dermatological

  • Skin rashes

Older people

  • Worsening frailty or dementia, lack of interest in eating or drinking

Table created from NG188.

© NICE 2020. COVID-19 rapid guideline: managing the long-term effects of COVID-19. Available from: www.nice.org.uk/guidance/ng188 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

2. Adopt a holistic, person-centred approach to clinical assessments

Clinicians making assessments should take a holistic, person-centred, and empathic approach.1 A carer or family member may be involved for patients who would benefit from support.1 The assessment should encompass physical, cognitive, psychological, and psychiatric symptoms, as well as functional abilities.1 The impact on the individual’s work, education, wellbeing, and any social isolation should be assessed.1

Much remains unknown about the course of this illness. Patients report a wide range of symptoms of different and fluctuating severity. Many have reported dismissive behaviour from some healthcare professionals.3 It is important for clinicians to keep an open mind during assessment and listen to the patient’s story.

3. Refer urgently if symptoms are acute or life-threatening

It should be borne in mind that, even 4 weeks or more after the start of suspected or confirmed acute COVID-19, some people with long COVID may require urgent referral to the relevant acute services.1 Refer patients with signs or symptoms that could be caused by an acute or life-threatening complication, including:1

  • severe hypoxaemia or oxygen desaturation on exercise
  • signs of severe lung disease
  • cardiac chest pain
  • multisystem inflammatory syndrome (in children).

The guideline also makes recommendations about referral of people with ongoing symptomatic COVID-19 or suspected post-COVID-19 syndrome and psychiatric symptoms:1

  • refer urgently for psychiatric assessment if they have severe psychiatric symptoms or are at risk of self-harm or suicide
  • consider referral:
    • for psychological therapies if they have common mental health symptoms, such as symptoms of mild anxiety and mild depression or
    • to a liaison psychiatry service if they have more complex needs (especially if they have a complex physical and mental health presentation).

4. Tailor investigations to the person’s symptoms

People may present to primary care with new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. Initial investigations will help to rule out acute or life-threatening complications and identify if symptoms are likely to be caused by long COVID or a new, unrelated diagnosis. Investigations should be tailored to the patient’s signs and symptoms (see Box 2).1

Box 2: Investigations for people with symptoms of ongoing symptomatic COVID-19 or post-COVID-19 syndrome1

  • Offer 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
  • If appropriate, offer an exercise tolerance test suited to the person’s ability (for example the 1-minute sit-to-stand test).5,6 During the exercise test, record level of breathlessness, heart rate and oxygen saturation. Follow an appropriate protocol to carry out the test safely (see the rationale section on investigations and referral for suggested protocols in NICE Guideline 188). For advice on sharing skills between services to help community services manage these assessments, see the recommendation on sharing skills and training in the section on service organisation in NICE Guideline 188
  • For people with postural symptoms, for example palpitations or dizziness on standing, carry out lying and standing blood pressure and heart rate recordings (i.e. 3-minute active stand test, or 10 minutes if you suspect postural tachycardia syndrome, or other forms of autonomic dysfunction)7
  • Offer a chest X-ray by 12 weeks after acute COVID-19 if the person has not already had one and they have continuing respiratory symptoms. Chest X-ray appearances alone should not determine the need for referral for further care. Be aware that a plain chest X-ray may not be sufficient to rule out lung disease.

© NICE 2020. COVID-19 rapid guideline: managing the long-term effects of COVID-19. Available from: www.nice.org.uk/guidance/ng188 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

If another diagnosis unrelated to COVID-19 is suspected, offer investigations and referral in line with relevant national or local guidance.1 After ruling out acute or life-threatening complications and alternative diagnoses, consider referring people to an integrated multidisciplinary assessment service (if available) any time from 4 weeks after the start of acute COVID-19.1 Do not exclude people from referral to a multidisciplinary assessment service or for further investigations or specialist input based on the absence of a positive COVID-19 test.1

5. Use shared decision making to develop plans for care and management

Shared decision making should be used with the patient (and family or carers, if appropriate) regarding the next steps for support and rehabilitation.1 The impact of symptoms on the person’s life should be considered, even if the individual symptoms do not warrant referral.1 The overall trajectory of the symptoms should be taken into account, as well as the issue that symptoms may fluctuate and recur, translating into differing support requirements at different times.1

Management options include:1

  • advice on self-management, with the option of supported self-management
  • support from integrated and coordinated primary care, community, rehabilitation, and mental health services
  • referral to an integrated multidisciplinary assessment service
  • referral to specialist care for specific complications.

Self-management can include setting realistic goals, signposting to support groups and social prescribing, and support with returning to work or education.1

Multidisciplinary teams should work together with the patient towards developing a personalised rehabilitation and management plan that is recorded in a patient prescription.1 Patients should be encouraged to record their progress by keeping a record or using a tracking app.1

Older people may need further support with short-term care packages, advance care planning, and/or support with bereavement or social isolation and loneliness.1

Children should be considered for referral for specialist advice from 4 weeks onwards post-acute COVID-19 if they have ongoing symptoms.1

Shared decision making should also be used to agree with patients how often monitoring should take place and which healthcare professionals should be involved.1 Supported self-monitoring at home may be part of the plan, if appropriate; for example heart rate, blood pressure, or pulse oximetry, with clear instructions as to when patients should seek help.1

6. Coordinate, communicate, and collaborate to ensure effective, continuous care

Evidence assessed in producing the guideline found that patients had experienced fragmented care or had struggled to access appropriate care.1 The guideline highlights the need for effective information sharing between teams, including care plans.1 Patients should be given a copy of their care plans or records to keep. Continuity of care with a single healthcare professional should be the aim.1

Multidisciplinary services should be led by a doctor with ‘relevant skills and experience’, taking into account the variety of presenting symptoms.1 Services should assess patients’ physical and mental health symptoms, and have access to further tests and investigations if needed.1 NICE suggests that appropriate team members include those from physiotherapy, occupational therapy, clinical psychology and psychiatry, and rehabilitation medicine; however, this list is not prescriptive and other core team members may be appropriate.1 The team should include professionals with expertise in treating respiratory symptoms and fatigue. Local integrated referral pathways should be agreed between different teams that may need to be involved for individual patients, for example, mental health, community teams, and specialist services.1

Summary

Long COVID is a new and emerging condition that can have a significant effect on people’s quality of life. NG188 provides advice on diagnosis and management based both on the best available evidence and the knowledge and experience of the expert panel. However, a group of healthcare professionals who have themselves experienced long COVID have criticised the guideline,3 stating it does not go far enough in addressing the issue of organ damage, but instead has an overreliance on self-management and psychological therapies and that there is insufficient consideration of the apparent relapsing-remitting nature of the condition. The group listed various severe complications that people have experienced after COVID-19 infection, including cardiac arrhythmias, microvascular angina, thromboembolic disease, myelopathy, and hepatitis.3 They call for clinics caring for people with long COVID to include assessment from a consultant physician from a medical specialty that addresses the assessment and management of organ and multisystem dysfunction. They also recommend greater inclusion of affected patients in clinical trials of potential treatments.3

NICE concludes the guideline with its own recommendations for research into the risk factors for developing post-COVID-19 syndrome and the effectiveness of rehabilitation interventions among different groups.1 The guideline has been developed using a ‘living’ approach, meaning that targeted areas of the guideline will be continuously reviewed and updated in response to emerging evidence.1

See Box 3 for some useful resources for patients and healthcare professionals on this emerging condition.

Box 3: Useful resources

RCGP=Royal College of General Practitioners; BMJ=British Medical Journal

Dr Claire Davies

GP, London

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Read the related Guidelines summary

Implementation actions for STPs and ICSs

written by Dr David Jenner, GP, Cullompton, Devon

The following implementation actions are designed to support STPs and ICSs with the challenges involved with implementing new guidance at a system level. Our aim is to help you consider how to deliver improvements to healthcare within the available resources.

  • Establish a multidisciplinary working party to respond to the challenge of long COVID
  • Plan how best to implement NICE Guideline 188, recognising that there is still much that is not known, including evidence for effective treatment
  • Define which interventions will be provided, and by whom, and identify the required funding streams
  • Establish clear referral criteria and pre-referral investigations, and publish these on local referral management websites
  • Publish self-help information for patients on websites that they can access directly to aid in their recovery
  • Continually review emerging evidence and adapt the local long COVID service to respond to this.

STP=sustainability and transformation partnership; ICS=integrated care system

References

  1. NICE, Scottish Intercollegiate Guidelines Network, Royal College of General Practitioners. COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE Guideline NG188. NICE, 2020. Available at: www.nice.org.uk/ng188
  2. Office for National Statistics. The prevalence of long COVID symptoms and COVID-19 complications. ONS, 2020. Available at: www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications
  3. Gorna R, MacDermott N, Rayner C et al. Long COVID guidelines need to reflect lived experience. Lancet 2020; 397: 455–457.
  4. National Institute for Health Research. A dynamic review of the evidence around ongoing COVID19 symptoms (often called Long Covid).  NIHR, 2020. Available at: www.evidence.nihr.ac.uk/themedreview/living-with-covid19
  5. Ozalevli S, Ozden A, Itil O, Akkoclu A. Comparison of the sit-to-stand test with 6 min walk test in patients with chronic obstructive pulmonary disease. Respir Med 2007; 101: 286–293.
  6. Briand J, Behal H, Chenivesse C et al. The 1-minute sit-to-stand test to detect exercise-induced oxygen desaturation in patients with interstitial lung disease. Ther Adv Respir Dis 2018; 12: 1–10.
  7. Royal College of Physicians. Measurement of lying and standing blood pressure as part of a multi-factorial falls risk assessment. Royal College of Physicians, 2017. Available at: www.rcplondon.ac.uk/projects/outputs/measurement-lying-and-standing-blood-pressure-brief-guide-clinical-staff