Dr Claire Davies identifies seven key learning points for primary care on managing long-term effects of COVID-19

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Dr Claire Davies

  • new and updated recommendations on the assessment and management of long-term effects of COVID-19
  • common signs and symptoms of post-COVID-19 syndrome in adults, and how children and young people may present differently
  • providing tailored investigations and using shared decision making to discuss options for management and referral.

Read this article online at: GinP.co.uk/456680.article

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Post-COVID-19 syndrome is having a profound effect on patients’ lives. The long-awaited update to NICE Guideline 188, COVID-19 rapid guideline: managing the long-term effects of COVID-19, was published in November 2021. As with the original guidance, issued in December 2020, was developed in collaboration with the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners in response to rapidly emerging patterns among patients with a persistent, wide-ranging array of symptoms following a confirmed or suspected COVID-19 infection. Post-COVID-19 syndrome is most notable for its impact on patients’ daily lives—commonly reported symptoms include fatigue, breathlessness, and ‘brain fog’.1 Patients may present with reduced performance in their work or education, and symptoms of cognitive dysfunction and anxiety or depression are also common.1 The Government-funded REal-time Assessment of Community Transmission (REACT) programme estimates that more than 2 million people in England have had at least one COVID-19 symptom lasting 12 weeks or more following primary infection with the virus.2 One in 10 study participants with persistent symptoms reported that their sympyoms were severe.2 The likelihood of having persistent symptoms increased with age, and was more common in women, people who are overweight or obese, those who smoke, those living in deprived areas, and those who had been admitted to hospital.2

NICE acknowledges throughout the guidance that there is a lack of certainty within the current evidence base; however, some consistent themes have emerged across all the available studies to inform the guidance, much of which is based on expert consensus.1

1. Be aware of the clinical case definitions

The guideline outlines a set of definitions for three phases following infection consistent with COVID-19; these clinical case definitions remain unchanged in the updated guideline, as detailed in Box 1.1

Box 1: Clinical case definitions to identify and diagnose 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 weeks up 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.

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 2021. COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE Guideline 188. NICE, 2021. Available at: www.nice.org.uk/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. Provide advice for patients with acute COVID-19

Patients with suspected or confirmed acute COVID-19, and their families or carers, should be given advice and written information on what to expect regarding their recovery.1 Recovery times are different for everyone, but patients should know how to seek advice about new, ongoing, or worsening symptoms, especially if it is more than 4 weeks after the initial illness.1 Some groups may be less likely to seek help—for example, because of language barriers, mental health issues, mobility or sensory impairments, learning disabilities, or cultural factors.1 It is important that these groups are given support and information on when to seek help as part of improving access to care and addressing health inequalities.1

The updated guideline contains new advice on COVID-19 vaccination—patients should be given information on COVID-19 vaccines and encouraged to follow current Government guidance on vaccination to reduce the risk of further infection.1 Resources can be found on the NHS and UK Health Security Agency websites.3,4 The NICE guideline states that it is not known whether vaccines have any effect on ongoing symptomatic COVID-19 or post-COVID-19 syndrome, and that this should be made clear to patients.1

3. Recognise the symptoms of long COVID

The list of common symptoms of post-COVID-19 syndrome remains largely the same in the updated guideline, with the addition of symptoms of post-traumatic stress disorder (see Box 2).1 Fatigue and shortness of breath are particularly common. This list is not exhaustive, and patients may present with other symptoms.

In addition, the updated guideline highlights important differences in symptoms reported in children. Children and young people less commonly report cardiovascular or respiratory symptoms, such as shortness of breath, cough, palpitations, and chest pain.1 Children may also present with reduced concentration, short-term memory loss, or difficulty with everyday tasks.1 Worsening achievement at school may be a ‘red flag’ for post-COVID-19 syndrome.1 Elderly people may present with worsening dementia or frailty, or a general decline in function.1

Absence of a positive polymerase chain reaction, antigen, or antibody test for COVID-19 should not exclude patients from support for symptoms of long COVID, as long as the case definition has been met.1

There is currently no evidence regarding the expected duration of post-COVID-19 syndrome.

Box 2: Commonly reported symptoms of long COVID1

Respiratory symptoms

  • Breathlessness
  • Cough.

Cardiovascular symptoms

  • Chest tightness
  • Chest pain
  • Palpitations.

Generalised symptoms

  • Fatigue
  • Fever
  • Pain.

Neurological symptoms

  • 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)
  • Mobility impairment
  • Visual disturbance.

Gastrointestinal symptoms

  • Abdominal pain
  • Nausea and vomiting
  • Diarrhoea
  • Weight loss and reduced appetite.

Musculoskeletal symtpoms

  • Joint pain
  • Muscle pain.

Ear, nose, and throat symptoms

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

Dermatological symptoms

  • Skin rashes
  • Hair loss.

Psychological/psychiatric symptoms

  • Symptoms of depression
  • Symptoms of anxiety
  • Symptoms of post-traumatic stress disorder.

© NICE 2021. COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE Guideline 188. NICE, 2021. Available at: www.nice.org.uk/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.

4. Offer an initial assessment for patients who have symptoms beyond 4 weeks

Consider proactive follow up at 6 weeks after suspected or confirmed infection for vulnerable or high-risk groups who self-managed in the community.1  Offer a face-to-face consultation whenever possible in the context of the pandemic.1 The guidance recommends that those who were admitted to hospital should be followed up in secondary care.1

The consultation should cover a comprehensive clinical history, including:1

  • history of an acute COVID-19 infection (suspected or confirmed)
  • nature and severity of previous and current symptoms
  • timing and duration of symptoms since the start of an acute COVID-19 infection
  • history of other health conditions
  • exacerbation of pre-existing conditions.

Discuss how the symptoms are affecting patients’ day-to-day lives, including work, education, mobility, and independence, and enquire about any feeings of worry and distress.1 Many patients report feeling fear and anxiety over their symptoms, and this can be magnified if symptoms are not taken seriously by healthcare professionals.1 Involving and enabling people to take an active role in their care may help to reduce any anxiety they may feel, and to avoid the appearance of being dismissive. The update highlights that increased absence or worse achievement at work or education are ‘red flags’ for long COVID that may be erroneously attributed to other causes. These individuals may need extra support or recovery time.1

An assessment of physical, cognitive, psychological, and psychiatric symptoms should take place; this examination should cover what is appropriate to the patient and their symptoms.1 The guideline advises healthcare professionals to consider using a screening questionnaire as part of the initial consultation to help capture all of the person’s symptoms. However, NICE was unable to recommend specific screening tools, and has made recommendations for further research in this area to determine which tools are most useful.1 Some screening questionnaires relevant to post-COVID-19 syndrome are available—for example, the COVID-19 Yorkshire Rehabilitation Scale is recommended by NHS England5 —but none are fully validated yet.

Based on the initial consultation, use a shared decision-making process to decide on the best course of action with regard to further assessments or investigations, with consideration of the availability of local services.1 Inform patients what to expect and who to contact for support.

5. Offer investigations tailored to the person’s symptoms

Use shared decision making with patients to offer investigations tailored to their symptoms to rule out acute or life-threatening complications, and to determine whether their symptoms are likely to be caused by long COVID.1 Also, consider the possibility of a new illness that is not related to COVID-19.1 There was insufficient evidence to enable NICE to provide a standardised list of investigations; however, the Guideline Development Group have issued a consensus recommendation based on commonly used tests in the available literature.1 Multiple investigations can be a negative experience for patients, and tests should be only carried out when clinically indicated.1 Potential investigations that may be offered include:1

  • full blood count
  • liver and kidney function
  • C-reactive protein
  • ferritin
  • B-type natriuretic peptide
  • glycated haemoglobin (HbA1c)
  • thyroid function tests
  • exercise tolerance tests—for example, the 1-minute sit-to-stand test6,7

Measurement of HbA1c is a new addition to the list of tests, and has been included in the update because of the importance of checking for metabolic disease, such as undiagnosed diabetes.

Lying and standing blood pressure and heart rate recording should be offered to people with postural symptoms—this should be a 3-minute active stand test for orthostatic hypotension, or 10 minutes if postural tachycardia is suspected. Chest X-rays should only be offered if the person has continuing respiratory symptoms.

Refer patients urgently to acute services if they have signs or symptoms that could be caused by an acute or life-threatening complication, including:1

  • hypoxaemia or oxygen desaturation on exercise
  • signs of severe lung disease
  • cardiac chest pain
  • paediatric inflammatory multisystem syndrome temporally associated with severe acute respiratory syndrome coronavirus-2.9

6. Provide personalised management advice and support

After the holistic assessment, use shared decision making with patients to decide on the most appropriate form of support, including how and when it should be provided.1 Options for management include:1

  • advice on self-management, with the option of supported self-management
  • one or more of the following, depending on clinical need and local pathways:
    • support from integrated primary care, community, rehabilitation, and mental health services
    • referral to an integrated multidisciplinary assessment service
    • referral to specialist care for specific complications.

Children with ongoing symptomatic COVID-19 or post-COVID-19 syndrome should be referred to specialist services from 4 weeks onwards.1 There was insufficient evidence for NICE to provide specific criteria on which patients should be referred to rehabilitation services.1 However, the panel reports from their own experience that interventions appear to be more effective if people receive help earlier.1 Therefore, GPs should consider referring people to an appropriate service, such as an integrated multidisciplinary assessment service, any time from 4 weeks after the onset of acute infection, depending on availability.1 However, many people experience spontaneous improvement between 4 and 12 weeks, and this group can also be offered self-management and support where appropriate.1

Self-management and supported self-management

If indicated and agreed with the patient, consider supported self-monitoring at home for heart rate, blood pressure, pulse oximetry, or symptom diaries, while being aware that this may not be suitable for some patients, as it may increase anxiety and therefore harm.1 Advice and information on self-management for patients could include:1

  • ways to self-manage their symptoms, such as setting realistic goals and keeping a record of any symptom changes, and their recovery and progress
  • who to contact if they are worried, or if they need support with self-management
  • sources of advice and support, including support groups, social prescribing, and apps and websites such as Your COVID Recovery and NHS inform10,11
  • how to get support from other services, including social care, housing, and employment, and advice about finiancial support
  • information about new and continuing symptoms that they can share with family, friends, and carers
  • support in discussions about returning to work or education—for example, by having a phased return.

The guideline highlights that there is no evidence for the use of over-the-counter vitamins or supplements in promoting recovery from ongoing symptomatic COVID-19 or post-COVID-19 syndrome.1

Older people and those with complex needs may need additional support, including short-term care packages, advance care planning, and support with loneliness or bereavement.1

7. Refer patients to multidisciplinary rehabilitation services

The guideline recommends referral to integrated, multidisciplinary rehabilitation services provided by a core team of practitioners in occupational therapy, physiotherapy, psychology and psychiatry, and rehabilitation medicine.1 The update emphasises that, because symptoms are so wide-ranging, other areas of expertise that could be useful include neurology, cardiology, paediatrics, dietetics, speech and language therapy, nursing, pharmacy, social care, and support with return to education or work.1

Patients referred to multidisciplinary rehabilitation services may benefit from receiving information on what to expect during their recovery, clear referral pathways, integrated assessments, and relevant copies of their clinical records.1

Summary

Post-COVID-19 syndrome is an emergent condition that can have a significant adverse impact on patients’ activities of daily living, wellbeing, and mental health. NICE has made recommendations for further research on long COVID in numerous areas, including effective interventions, prevalence in vaccinated people, prognostic markers, and presentation in children, young adults, pregnant women, and older people.1 The guidance has been developed with a ‘living’ approach, meaning that it will be continuously reviewed and updated as new evidence comes to light.1

Key points

  • Post-COVID-19 syndrome is characterised by signs and symptoms that develop during or after an infection consistent with COVID-19, continue for >12 weeks, and are not explained by an alternative diagnosis
  • Common symptoms of long COVID include fatigure, breathlessness, and ‘brain fog’
  • Children have with different symptoms than adults—they less commonly report cardiovascular and respiratory symptoms, but may present with reduced concentration or short-term memory loss
  • An initial assessment should involve taking a comprehensive clinical history that includes the nature and severity of previous and current symptoms, timing and duration of symptoms, and history of other health conditions
  • Physical, cognitive, psychological, and psychiatric symptoms should be assessed
  • Investigations should be tailored to the patient’s symptoms, and only carried out when clinically indicated
  • Shared decision making with patients should be used to decide on appropriate management options, including supported self-management
  • Patients can be referred to integrated, multidisciplinary rehabilitation services to help with their recovery.

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 in implementing new guidance at a system level. Our aim is to help you to consider how to deliver improvements to healthcare within the available resources.

  • Recognise that this condition is common but still poorly understood, variable, and there is little evidence on effective treatments 
  • Establish a local multidisciplinary working group to respond to the enormity of this challenge, with an estimated one in 15 of the population in England testing positive for COVID-19 as of 31 December 2021[A]
  • Define local care pathways based on the guidance to allow access to specialist and support services, either through referral or self-referral
  • Consider providing dedicated web-based resources for patients to access themselves, given that GPs and specialist services are under severe strain due to the pandemic and managing the backlog in treatment for non-COVID-19 pathologies
  • Be realistic as to what local systems can provide within current workforce restraints, and identify priority groups for support and interventions
  • Ensure that the working group continually reappraises the emerging evidence base on long COVID and the ability of the local care system to provide support, developing new services as evidence suggests and the system can realistically provide.

[A] Office for National Statistics. Coronavirus (COVID-19) infection survey headline results, UK. ONS, 2022. www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/datasets/coronaviruscovid19infectionsurveyheadlineresultsuk

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

Dr Claire Davies

GP, London

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References

  1. NICE. COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE Guideline 188. NICE, 2020 (last updated November 2021). Available at: www.nice.org.uk/ng188
  2. GOV.UK website. New research shows 2 million people may have had long COVID. www.gov.uk/government/news/new-research-shows-2-million-people-may-have-had-long-covid (accessed 12 January 2022).
  3. GOV.UK website. COVID-19 vaccination programme. www.gov.uk/government/collections/covid-19-vaccination-programme (accessed 12 January 2022).
  4. NHS website. Coronavirus (COVID-19) vaccines. www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine/ (accessed 12 January 2022).
  5. C19-YRS website. COVID-19 Yorkshire Rehabilitation Scale. c19-yrs.com/ (accessed 12 January 2022).
  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. 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 (2): 286–293.
  8. Royal College of Physicians. Measurement of lying and standing blood pressure: a brief guide for clinical staff. London: RCP, 2017. Available at: www.rcplondon.ac.uk/projects/outputs/measurement-lying-and-standing-blood-pressure-brief-guide-clinical-staff
  9. Royal College of Paediatrics and Child Health. Guidance: paediatric multisystem inflammatory syndrome temporally associated with COVID-19 (PIMS)—guidance for clinicians. London: RCPCH, 2020. Available at: www.rcpch.ac.uk/resources/paediatric-multisystem-inflammatory-syndrome-temporally-associated-covid-19-pims-guidance
  10. NHS Your COVID Recovery website. Supporting your recovery after COVID-19. www.yourcovidrecovery.nhs.uk/ (accessed 12 January 2022).
  11. NHS inform website. Long-term effects of COVID-19. www.nhsinform.scot/long-term-effects-of-covid-19-long-covid/about-long-covid/your-recovery/ (accessed 12 January 2022).

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