Dr Ashish Chaudhry and Dr Harsha Master offer nine top tips for recognising and managing long COVID-19 symptoms in primary care

CHAUDHRY_Ashish_resize

Dr Ashish Chaudhry

MASTER_Harsha

Dr Harsha Master

Read this article to learn more about:

  • lingering or new symptoms after an acute case of COVID-19, known as ‘long COVID’
  • identifying patients with long COVID
  • managing or referring patients who need active intervention and investigation.

Implementation actions for STPs and ICSs

In primary care, practices are starting to see a rise in unexplained symptoms following acute COVID-19. Many patients are experiencing prolonged and distressing symptoms that are lingering or arising de novo weeks to months after exposure. This is being called ‘long COVID’ or ‘post-acute COVID syndrome’. Until recently, there has been very little guidance available to offer advice on managing patients with this syndrome. However, NICE, the Scottish Intercollegiate Guidelines Network (SIGN), and the Royal College of General Practitioners collaborated to publish a COVID-19 rapid guideline on this topic, Managing the long-term effects of COVID-19, in December 2020.1,2

This article includes top tips, based on the authors’ clinical experience, to help primary care healthcare practitioners manage patients with long COVID and develop an understanding of what to consider when it is encountered in practice.

1. Think ‘long COVID’ in anyone with relevant symptoms

Consider long COVID in anyone who is having a prolonged recovery (4–6 weeks) after either confirmed or suspected COVID-19, whether they were admitted to hospital or managed in the community.

From our experience working at the Hertfordshire Community NHS Trust COVID-19 Rehabilitation Service, the common presenting features align with what has been described in current literature, including:3–5

  • ongoing shortness of breath on exertion
  • reduced exercise tolerance
  • fatigue
  • dizziness
  • pain (commonly chest pain, headaches, muscle pains, and joint pains)
  • palpitations or tachycardia
  • insomnia
  • problems with memory and concentration
  • anxiety, depression, and post-traumatic stress disorder.

Survivors of COVID-19 report a wide range of long-term symptoms (see bloom.bg/3qFU7IS).6 Less common problems include persistent altered smell/taste, rashes, persisting fever, and gastrointestinal problems.4,5

Other issues, including vocal disturbances, new-onset diabetes, neuropathic pain, paraesthesia, and deterioration of pre-existing conditions have also been reported from experience, including by physicians working in long COVID clinics. Long COVID is thought to be due to an exaggerated immune response and autonomic dysregulation caused by the acute infection.7 Presentation is often with multiple, complex symptoms that can remit and relapse and echo their initial illness. Mild overexertion can trigger relapse.

2. Remember that a negative test does not exclude COVID-19

A negative antigen or antibody test does not exclude COVID-19 as a cause of symptoms. Additionally, during the first wave, many people did not have tests or did not meet the criteria for testing at that time, so may have contracted the virus without detection. Even a patient who has been tested may have received a false-negative result. As such, long COVID should still be considered even in the absence of a positive COVID-19 test result, provided that there are symptoms typical of the acute and post-acute phases of the illness.

3. Be vigilant, even in patients who were not hospitalised

It is now well established that some patients who were not admitted to hospital during the acute phase of their illness are still experiencing long COVID.5 Although most patients seen so far at the Hertfordshire Community NHS Trust clinic had initial symptoms that lasted for more than 1 week, this has not always been the case. There is ongoing research to look at the potential long-term effects of COVID-19 in non-hospitalised patients.8

4. Perform a clinical assessment

Undertake a clinical assessment, including oxygen saturation, blood pressure, pulse rate, temperature, and a physical examination. Blood tests may also be informative, including a full blood count, B12 and folate, urea and electrolytes, liver function tests, ferritin, and thyroid function tests. A chest X-ray, electrocardiogram, and a brain natriuretic peptide test may be useful if the patient is experiencing ongoing dyspnoea, cough, or palpitations.1,3 Consider and rule out common conditions as you normally would, and do not assume that all symptoms are related to long COVID.9 Consider checking and optimising vitamin D levels, because vitamin D is important to cell function and recovery. This should also help to screen for other concurrent diagnoses.10–12

Oxygen saturation at rest may not always be a reliable measure. Consider home pulse oximetry monitoring, or a 1-minute sit-to-stand test (see Box 1) to demonstrate exertional desaturation.13,14

Box 1: 1-minute sit-to-stand test15,16

  1. The patient should be seated:
    • upright on a chair without rests
    • with their knees and hips flexed to 90°
    • with their feet placed flat on the floor, hip-width apart
    • with their hands placed on their hips.
  2. The patient should then be asked to go from sitting to standing as many times as they can in 1 minute. Each sit to stand should be observed carefully to ensure that a complete sit to stand is achieved.
  3. Oxygen saturation, pulse, and perceived exertion (using the Borg exertion or breathlessness scale) at rest and immediately after 1 minute should be recorded.

The test should be terminated promptly if any adverse symptoms (such as severe shortness of breath, chest pain, syncope, or dizziness) develop.

A drop in oxygen saturation of >3% (e.g. 97–94%) is considered significant and warrants exclusion of pulmonary embolism.17

5. Be alert to red flag symptoms

Although COVID-19 infection primarily affects the lungs, it has been found to damage the vascular endothelium of multiple other organs, notably the heart, brain, and kidneys, resulting in a multisystem disorder.18

Look out for red flag symptoms, such as those found in transient ischaemic attack, stroke, pulmonary embolism, ischaemia, tachyarrhythmia, and myocarditis; cases of all of these have been seen post-COVID-19.3,1923 Patients who sound or look very sick may need immediate medical help.

Red flags include:3,9,18

  • severe or worsening shortness of breath
  • low oxygen saturation (<94% at rest) or desaturation on exertion
  • unexplained chest pain
  • severe dizziness or syncope on exertion
  • palpitations or tachycardia at rest or on minimal exertion
  • focal weakness
  • new confusion or expressive dysphasia.

Work is needed to streamline patient journeys into long COVID clinics from both primary and secondary care, so be alert to ongoing symptoms. If serious potential complications are suspected, assess and manage via usual local pathways for acute care.

Think laterally

Based on clinical experience, long COVID symptoms can be multifactorial and interlinked. For example, dizziness can be caused by a tachyarrhythmia, but could also be caused by exertional desaturation. Consider cardiological, respiratory, neurological, autonomic (for example, postural orthostatic tachycardia syndrome), and psychological causes when deciding how to investigate further.

Remember to consider the possibility of dual pathology, which may appear incidentally and may or may not be related to COVID. It is important to work through the usual symptoms and differentials, while being aware of potential COVID bias.

6. Listen to the patient

Be sympathetic to patients and explore their concerns. In our experience, many patients with a prolonged recovery after COVID-19 were previously very fit and well, with no significant past medical history.

Although most patients do recover with rest, support, and management of symptoms, some may take longer. Consider further investigations and referral if recovery is particularly prolonged or if symptoms persist and are significantly affecting daily life. It is useful to do a comparison of a patient’s pre- and post-COVID-19 function to assess the severity of their symptoms.

7. Think holistically about long COVID

As well as the physical implications, consider the functional, emotional, and psychological impacts of long COVID. These may include anxiety, depression, or post-traumatic stress resulting from the physical illness itself or from isolation.24 Socioeconomic issues, stigma, or discrimination are also common.25 Remember, you are just as much an expert as anyone else because there is very little guidance. Recommend lifestyle advice including rest, sleep hygiene, healthy diet, vitamin D, multivitamins, moderating alcohol intake, and smoking cessation as supportive measures that you would normally recommend in any illness requiring convalescence to promote physical and psychological wellbeing.26,27 NICE has recommended further research to identify the role of vitamin D in the treatment and prevention of COVID‑19; however, in populations where vitamin D deficiency is common, there is little to lose and much to gain by encouraging people to take a vitamin D supplement in line with UK government advice.12

Focus management on treatable symptoms. Direct patients to helpful resources such as the NHS Your COVID recovery website.28 Although there is a lack of evidence currently, consider advice on pacing (see Box 2), which may help to support your patients holistically. 

Box 2: Exercise and pacing

There is much debate and controversy about the role of graded exercise in chronic fatigue generally and in COVID-19, as per a recent statement from NICE.29

The current advice is that exercise should be undertaken cautiously. If there are any persisting symptoms of fatigue, cough, breathlessness, or fever, activity should be limited to 60% of the patient’s maximum heart rate until 2–3 weeks after symptoms resolve. Patients with cardiac symptoms should have a cardiac review before resuming exercise.

Patients returning to exercise should tailor their activities to their symptoms:30

  • after recovery from mild illness: 1 week of low level stretching and strengthening before targeted cardiovascular sessions
  • very mild symptoms: limit activity to slow walking or equivalent; increase rest periods if symptoms worsen, and avoid high intensity training
  • persistent symptoms (such as fatigue, cough, shortness of breath, fever): limit activity to 60% maximum heart rate until 2–3 weeks after symptoms resolve
  • patients who had lymphopenia or required oxygen should undergo respiratory assessment before resuming exercise
  • patients with suspected cardiac involvement should undergo cardiac assessment before resuming exercise.

Offer support through locally available talking therapies, or online therapies on the NHS Mental health and wellbeing website.31 Some local trusts running long COVID clinics have also produced useful patient information packs with advice about managing symptoms and strategies for self-care (see Box 3).

Box 3: Useful sources of patient information on COVID-19 recovery

Consider how a patient’s symptoms may affect their physical and cognitive functioning and their ability to undertake their job, and whether they may need employment support. If necessary, advise referral to occupational health in their fit notes. These simple measures may significantly improve quality of life.

8. Refer patients to long COVID clinics

It is reasonable to refer patients to relevant specialties for investigation based on their presentation, but it’s worth also considering the potential for multiple organ involvement. If available locally, refer patients to a long COVID clinic, where patients are commonly triaged using detailed screening questionnaires.38 They may require further medical assessment, investigations such as a computed tomography scan, lung function testing, 24-hour cardiac monitoring, echocardiography, stress testing, or referral for further specialist review may be indicated.

Patients can also be referred to other interventional services, ideally within the same integrated multidisciplinary team, such as pulmonary rehabilitation, chronic fatigue, clinical psychology, or wellbeing services, in order to start their rehabilitation journey.

9. Encourage patients to own their recovery

Once red flag conditions have been ruled out, signpost patients to resources that will help them manage their symptoms; a good self-care habit is for patients to keep an activity diary such as The road to recovery activity planner from the Chartered Society of Physiotherapy.34 Consider whether breathing exercises to help restore diaphragmatic movements may be useful, and manage symptoms as you normally would in primary care.32,39 The ‘Three Ps’ principle (pace, plan, and prioritise) may provide a framework to help you structure discussion about rehabilitation while patients are awaiting review in the long COVID clinic.28

Summary

COVID-19 is still a new illness and we are constantly learning more about its course and long-term implications. More research is needed, but some useful guidance is already available from SIGN and NICE, and more research about longer-term effects of COVID-19 and management in non-hospitalised individuals is in the pipeline from the National Institute for Health Research. Be an advocate for your patients in this difficult time and acknowledge the uncertainty we are all facing. Identification, assessment, investigation, and rehabilitation (ideally within a multidisciplinary setting) are all going to be key factors in managing patients with long COVID.

Dr Ashish Chaudhry

GP and Educator

Member of the UK Doctors Long COVID Group

Dr Harsha Master

GP Lead, Hertfordshire Community NHS Trust COVID-19 Rehabilitation Service

Want to learn more about this guideline?

GLNs G Logo small

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. 

  • Recognise that significant numbers of patients may present with the symptoms of long COVID and prepare to respond to this new clinical syndrome
  • Consider defining a local algorithm for the recognition, investigation, and management of people with long COVID and publish this on local websites 
  • Review the evidence continually as it appears, to identify any treatment and management options that provide clear benefit
  • Provide easy-read guidance aimed at people experiencing long COVID to give them information about the condition and when to seek help
  • Establish local long COVID rehabilitation centres and define care pathways for referral to avoid them becoming swamped.

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

References

  1. NICE. COVID-19 guideline: management of the long-term effects of COVID-19. NICE guideline 188. NICE, December 2020. Available at: www.nice.org.uk/ng188
  2. Scottish Intercollegiate Guidelines Network. Managing the long-term effects of COVID-19. SIGN 161. SIGN, December 2020. Available at: www.sign.ac.uk/media/1800/sign161-long-term-effects-of-covid19-10.pdf
  3. Greenhalgh T, Knight M, A’Court C et al. Management of post-acute covid-19 in primary care. BMJ 2020; 370: m3026.
  4. Lambert N, Survivor Corps. COVID-19 “long hauler” symptoms survey report. Indiana School of Medicine, July 2020. Available at: dig.abclocal.go.com/wls/documents/2020/072720-wls-covid-symptom-study-doc.pdf
  5. Sudre C, Murray B, Varsavsky T et al. Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the COVID Symptoms Study App (pre-print before peer review). medRxiv 2020; DOI: 10.1101/2020.10.19.20214494.
  6. Nisen M, He E. COVID everlasting. Bloomberg Opinion, September 2020. www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness/ (accessed 17 December 2020).
  7. Dani M, Dirkson A, Taraborrelli P et al. Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies. Clin Med 2020; 21 (1): ePub ahead of print. DOI: doi.org/10.7861/clinmed.2020-0896
  8. National Institute for Health Research. Research into the longer term effects of COVID-19 in non-hospitalised individuals. www.nihr.ac.uk/documents/research-into-the-longer-term-effects-of-covid-19-in-non-hospitalised-individuals-call-scope/26101 (accessed 17 December 2020).
  9. Lip S, Peters E, Watts M, et al. COVID-19 Scottish primary care hub triage guide. University of Glasgow, June 2020. Available at: eprints.gla.ac.uk/221326/2/221326InfoGraphic.pdf
  10. Hernández J, Nan D, Fernandez-Ayala M et al. Vitamin D status in hospitalized patients with SARS-CoV-2 Infection. J Clin Endocrinol Metab 2020: dgaa733. DOI: doi.org/10.1210/clinem/dgaa733.
  11. Martineau A, Forouhi N. Vitamin D for COVID-19: a case to answer? Lancet Diabetes Endocrinol 2020; 8 (9): 735–736.
  12. NICE. COVID-19 rapid guideline: vitamin D. NICE Guideline 187. NICE, 2020. Available at: www.nice.org.uk/ng187
  13. Vaidya T, Chambellan A, de Bisschop C. Sit-to-stand tests for COPD: a literature review. Respir Med 2017; 128: 70–77.
  14. Greenhalgh T, Javid B, Knight M et al for the Oxford COVID-19 Evidence Service Team. What is the efficacy and safety of rapid exercise tests for exertional desaturation in COVID-19? Centre for Evidence-Based Medicine, April 2020. www.cebm.net/covid-19/what-is-the-efficacy-and-safety-of-rapid-exercise-tests-for-exertional-desaturation-in-covid-19/ (accessed 17 December 2020).
  15. 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.
  16. Janssen W, Bussmann H, Stam H. Determinants of the sit-to-stand movement: a review. Physical Therapy 2002; 82 (9): 866–879.
  17. O’Driscoll B, Howard L, Earis J, Mak V on behalf of the BTS Emergency Oxygen Guideline Development Group. British Thoracic Society Guideline for oxygen use in adults in healthcare and emergency settings. BMJ Open Resp Res 2017; 4: e000170.
  18. Editorial. Understanding the long-term health effects of COVID-19. EClinicalMedicine 2020; 26: 100586.
  19. Dennis A, Wamil M, Kapur S et al. Multi-organ impairment in low-risk individuals with long COVID (pre-print before peer review). medRxiv 2020; DOI: 10.1101/2020.10.14.20212555.
  20. Puntmann V, Carerj L, Wieters I et al. Outcomes of cardiovascular magnetic resonance imaging in patients recently recovered from coronavirus disease 2019 (COVID-19). JAMA Cardiol 2020; 5 (11): 1265–1273.
  21. Fraser E. Long term respiratory complications of COVID-19. BMJ 2020; 370: m3001.
  22. A’Court C, Shanmuganathan M, Leoni-Moreno J. COVID-19 and cardiac considerations in the community. Br J Gen Pract 2020; 70 (700): 524–525.
  23. Paterson R, Brown R, Benjamin L et al for the UCL Queen Square National Hospital for Neurology and Neurosurgery COVID-19 Study Group. The emerging spectrum of COVID-19 neurology: clinical, radiological and laboratory findings. Brain 2020; 143 (10): 3104–3120.
  24. Serafini G, Parmigiani B, Amerio A et al. The psychological impact of COVID-19 on the mental health in the general population. QJM 2020; 113 (8): 531–537.
  25. Sotgiu G, Dobler C. Social stigma in the time of coronavirus (in press). Eur Resp J 2020; DOI: 10.1183/13993003.02461-2020
  26. Ong J, Lau T, Massar S et al. COVID-19-related mobility reduction: heterogenous effects on sleep and physical activity rhythms. Sleep 2020: zsaa179. DOI: doi.org/10.1093/sleep/zsaa179
  27. Lange K, Nakamura Y. Lifestyle factors in the prevention of COVID-19. Global Health Journal 2020; 4 (4): 146–152.
  28. NHS England. Your COVID recovery website. NHS England, 2020. www.yourcovidrecovery.nhs.uk (accessed 17 December 2020).
  29. NICE. Statement about graded exercise therapy in the context of COVID-19. Guideline in development. Available at: www.nice.org.uk/guidance/gid-ng10091/documents/statement
  30. Barker-Davies R, O’Sullivan O, Senaratne K et al. The Stanford Hall consensus statement for post COVID-19 rehabilitation. Br J Sports Med 2020; 54: 949–959.
  31. NHS England. Mental health and wellbeing. Available at: www.england.nhs.uk/nhsbirthday/get-involved/live-well/mental-health-and-wellbeing/ (accessed 21 December 2020).
  32. Adult Cardiorespiratory Enhanced and Responsive service, Homerton University Hospital NHS Foundation Trust. Post COVID-19 patient information pack. Hackney Citizen, May 2020. Available at: www.hackneycitizen.co.uk/wp-content/uploads/Post-COVID-19-information-pack-5.pdf
  33. Hertfordshire Community NHS Trust. Information pack for patients who have had COVID-19 or COVID-19 symptoms. Welwyn Garden City: HCT, 2020. Available at: www.hct.nhs.uk/media/4113/covid-19-patient-information-pack-for-patients-with-symptoms-october-2020.pdf
  34. Royal College of Occupational Therapists. How to conserve your energy—practical advice for people during and after having COVID-19. Available at: www.rcot.co.uk/conserving-energy (accessed 21 December 2020).
  35. Chartered Society of Physiotherapy. COVID-19: the road to recovery activity planner. London: CSP, 2020. Available at: www.csp.org.uk/system/files/documents/2020-06/001751_covid19-the_road_to_recovery_activity_planner_v3.pdf
  36. Mental Health Foundation. How to look after your mental health during the coronavirus outbreak. Available at: www.mentalhealth.org.uk/coronavirus (accessed 21 December 2020).
  37. Mind. Coronavirus and your mental health. Available at: www.mind.org.uk/information-support/coronavirus/ (accessed 21 December 2020).
  38. Sivan M, Halpin S, Gee J. Assessing long term rehabilitation needs in COVID-19 survivors using a telephone screening tool (C19-YRS tool). Adv Clin Neurosci Rehabil 2020; 19: 14–17.
  39. Chartered Society of Physiotherapy. COVID-19: the road to recovery. www.csp.org.uk/public-patient/covid-19-road-recovery (accessed 17 December 2020).