Practice Practice Pointer BMJ
Management of post-acute covid-19 in primary care
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3026 (Published 11 August 2020)Cite this as: BMJ 2020;370:m3026
Trisha Greenhalgh, professor of primary care health sciences1, et al
Correspondence to: T Greenhalgh [email protected]
What you need to know
Defining post-acute covid-19
In the absence of agreed definitions, for the purposes of this article we define post-acute covid-19 as extending beyond three weeks from the onset of first symptoms and chronic covid-19 as extending beyond 12 weeks. Since many people were not tested, and false negative tests are common,4 we suggest that a positive test for covid-19 is not a prerequisite for diagnosis.
How common is it?
Around 10% of patients who have tested positive for SARS-CoV-2 virus remain unwell beyond three weeks, and a smaller proportion for months (see box 1).7 This is based on the UK COVID Symptom Study, in which people enter their ongoing symptoms on a smartphone app. This percentage is lower than that cited in many published observational studies,89 whose denominator populations were those admitted to hospital or attending specialist clinics. A recent US study found that only 65% of people had returned to their previous level of health 14-21 days after a positive test.10
Box 1
A patient’s account
My wife, kids, and I all had symptoms of presumed covid-19 in early April 2020. They were soon fine, but I was more unwell and ended up in bed extremely fatigued, lethargic, and without appetite for four days.
The only person whose symptoms persisted was myself, and the fatigue which I had experienced was still lingering in the background. From this point onwards, it became difficult to engage fully in day to day activities with my normal energy levels. Exercise, of which I do a fair amount, was not at all possible.
I continued to feel like this for another three weeks, before finally feeling completely overwhelmed. This happened very quickly and without warning, resulting in me heading for bed immediately as I felt so bad. For the next 72 hours, I felt unwell in a way that was bordering on not coping. I was feverish, soaked with sweat to the point of having to regularly towel myself down, and with a persistent headache that had no relief in spite of increased doses of paracetamol or ibuprofen.
My chest was painfully tight, and my breathing was slightly erratic; I began to experience a shortness of breath in random waves that didn’t leave me gasping for air but certainly made me uncomfortable and very worried. My glands were swollen to the point that it was physically challenging to swallow, and this was only possible with severe discomfort. I felt physically exhausted, mentally drained, and, for the first time in my life, began to consider asking for additional help.
It was at this point that I noticed I had also not had any sense of smell for the past week, and this has continued to be the case since.
Overall, I spent seven days feeling like I had been knocked sideways. I rarely get unwell, and if I do it’s a fleeting fling with something that is usually seasonal and easily self medicated. This felt very different and was particularly challenging as there were points during my sickness that I was completely overwhelmed.
As far as recovery goes, it has now taken a full seven to eight weeks to start feeling close to my normal self again. In the aftermath of this, I have continued to experience the following: fatigued to the point of having to sleep in the day, inability to exercise, continued shortness of breath both motionless and when exerting, small waves of anxiety, considerable depression, continued loss of smell. These are all post-symptoms that I have had no experience or medical history with, and so it has been difficult to wrestle with the unexpectedness of them.
I’m back out doing moderate exercise now and glad to be through what has been a very difficult 12 week cycle from start to end.
Why are some people affected?
It is not known why some people’s recovery is prolonged. Persistent viraemia due to weak or absent antibody response,11 relapse or reinfection,12 inflammatory and other immune reactions,1314 deconditioning,2 and mental factors such as post-traumatic stress1516 may all contribute. Long term respiratory, musculoskeletal, and neuropsychiatric sequelae have been described for other coronaviruses (SARS and MERS),171819202122 and these have pathophysiological parallels with post-acute covid-19.23
What are the symptoms?
Post-acute covid-19 symptoms vary widely. Even so-called mild covid-19 may be associated with long term symptoms, most commonly cough, low grade fever, and fatigue, all of which may relapse and remit.47 Other reported symptoms include shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions.424 Skin rashes can take many forms including vesicular, maculopapular, urticarial, or chilblain-like lesions on the extremities (so called covid toe).25 There seems to be no need to refer or investigate these if the patient is otherwise well.
What tests are required?
Blood tests should be ordered selectively and for specific clinical indications after a careful history and examination (see infographic); the patient may not need any. Anaemia should be excluded in the breathless patient. Lymphopenia is a feature of severe, acute covid-19. Elevated biomarkers may include C reactive protein (for example, acute infection), white cell count (infection or inflammatory response), natriuretic peptides (for example, heart failure), ferritin (inflammation and continuing prothrombotic state), troponin (acute coronary syndrome or myocarditis) and D-dimer (thromboembolic disease). Troponin and D-dimer tests may be falsely positive, but a negative result can reduce clinical uncertainty. Further research is likely to refine the indications for, and interpretation of, diagnostic and monitoring tests in follow-up of covid-19.
For patients who were not admitted to intensive care, British Thoracic Society guidance on follow-up of covid-19 patients who have had a significant respiratory illness proposes community follow-up with a chest x ray at 12 weeks and referral for new, persistent, or progressive symptoms.26 For those with evidence of lung damage (such as persistent abnormal chest x ray and oximeter readings), referral to a respiratory service is recommended; subsequent early referral to pulmonary rehabilitation probably aids recovery.
Supporting recovery from covid-19
After excluding serious ongoing complications or comorbidities, and until the results of long term follow-up studies are available, patients should be managed pragmatically and symptomatically with an emphasis on holistic support while avoiding over-investigation.2 Fever, for example, may be treated symptomatically with paracetamol or non-steroidal anti-inflammatory drugs. Monitoring functional status in post-acute coivd-19 patients is not yet an exact science. A post-covid-19 functional status scale has been developed pragmatically but not formally validated27—a simplified version of this is reproduced in the supplementary material.
Referral to a specialist rehabilitation service does not seem to be needed for most patients, who can expect a gradual, if sometimes protracted, improvement in energy levels and breathlessness, aided by careful pacing, prioritisation, and modest goal setting. In our experience, most but not all patients who were not admitted to hospital recover well with four to six weeks of light aerobic exercise (such as walking or Pilates), gradually increasing in intensity as tolerated. Those returning to employment may need support to negotiate a phased return. Box 5 links to patient resources, including a comprehensive patient guide from Homerton University Hospital.28
Respiratory symptoms and support
Cough
The British Thoracic Society defines chronic cough as one that persists beyond eight weeks.26 Up to that time, and unless there are signs of super-infection or other complications such as painful pleural inflammation, cough seems to be best managed with simple breathing control exercises28 (see box 2) and medication where indicated (such as proton pump inhibitors if reflux is suspected).
Box 2
Breathing techniques
About 80% of the work of breathing is done by the diaphragm. After illness or general deconditioning, the breathing pattern may be altered, with reduced diaphragmatic movement and greater use of neck and shoulder accessory muscles. This results in shallow breathing, increasing fatigue and breathlessness, and higher energy expenditure. The “breathing control” technique is aimed at normalising breathing patterns and increasing the efficiency of the respiratory muscles (including the diaphragm) resulting in less energy expenditure, less airway irritation, reduced fatigue, and improvement in breathlessness.
The patient should sit in a supported position and breathe in and out slowly, preferably in through the nose and out through the mouth, while relaxing the chest and shoulders and allowing the tummy to rise. They should aim for an inspiration to expiration ratio of 1:2. This technique can be used frequently throughout the day, in 5-10 minute bursts (or longer if helpful).
Other breathing techniques—such as diaphragmatic breathing, slow deep breathing, pursed lip breathing, yoga techniques, Buteyko—are used in strategies to manage patients’ breathing patterns and breathlessness but require specialist advice to identify which technique best suits each patient.
RETURN TO TEXT
Breathlessness
A degree of breathlessness is common after acute covid-19. Severe breathlessness, which is rare in patients who were not hospitalised, may require urgent referral. Breathlessness tends to improve with breathing exercises (box 2). Pulse oximeters may be extremely useful for assessing and monitoring respiratory symptoms after covid-19, and we could find no evidence that their use in the home leads to increased anxiety (box 3).
Box 3
Use of pulse oximetry in post-acute covid-19
Hypoxia may reflect impaired oxygen diffusion and is a recognised feature of covid-19. It may be asymptomatic (so called silent hypoxia29) or symptomatic (reflecting increased work of breathing, or secondary pathology such as a bacterial pneumonia or thromboembolism). Oxygen saturation probes (pulse oximeters) have been used as part of a package of care for patients with covid-19 and are recommended as part of the assessment of acute covid-19 in national and local guidelines.303132
Self monitoring of oxygen saturations over three to five days may be useful in the assessment and reassurance of patients with persistent dyspnoea in the post-acute phase, especially those in whom baseline saturations are normal and no other cause for dyspnoea is found on thorough evaluation. An exertional desaturation test should be performed as part of baseline assessment for patients whose resting pulse oximeter reading is 96% or above but whose symptoms suggest exertional desaturation (such as light-headedness or severe breathlessness on exercise). In the absence of contraindications, such patients should be invited to repeat the oximeter reading after 40 steps on a flat surface (if self testing remotely) and then after spending one minute doing sit-to-stand as fast as they can (if supervised on site).33 A fall of 3% in the saturation reading on mild exertion is abnormal and requires investigation.33
Patients should be provided with a pulse oximeter and an observations diary and given instructions for how to self monitor.34 Typically, this would be a daily reading taken on a clean, warm finger without nail polish, after resting for 20 minutes; the device should be left to stabilise and the highest reading obtained should be recorded. While the range of commercially available oxygen saturation probes from healthcare suppliers and pharmacies seem to work within normal ranges (92% and above), smartphone apps that purport to measure oxygen saturations using the phone camera and torch should not be used.35
British Thoracic Society guidelines define the target range for oxygen saturation as 94-98% and a level of 92% or below as requiring supplementary oxygen (unless the patient is in chronic respiratory failure).36 In the context of a normal assessment (history, examination, and appropriate investigations) without red flags, an oxygen saturation of 96% or above and the absence of desaturation on exertional tests is very reassuring. Further investigation or referral in the first six weeks after covid-19 in such patients is rarely indicated, though regular support by telephone or video is likely to be appreciated. Oximeter readings persistently in the 94-95% range or below (indicating substantially farther down the oxygen-haemoglobin desaturation curve37) require assessment and investigation. The patient should be provided with safety-netting advice (such as contacting their general practice or NHS111) in the event of recurrent low saturation readings. Appropriate adjustments should be made for patients with lung disease and known hypoxia—in whom the range of 88-92% is considered acceptable.
Recovery after any severe debilitating illness may be prolonged.38 Survivors of covid-19 acute respiratory distress syndrome are at risk of long term impairment of lung function.394041 Serious interstitial lung disease seems to be rare in patients who are not hypoxic, though data on long term outcomes are not yet available.42
Pulmonary rehabilitation
Many patients are still recovering spontaneously in the first six weeks after acute covid-19 and do not generally require fast-track entry into a pulmonary rehabilitation programme. Those who have had significant respiratory illness may benefit from pulmonary rehabilitation, defined as “a multidisciplinary intervention based on personalised evaluation and treatment which includes, but is not limited to, exercise training, education, and behavioural modification designed to improve the physical and psychological condition of people with respiratory disease.”43 In the context of covid-19, rehabilitation is being delivered by various virtual models, including video linked classes and home education booklets with additional telephone support. We describe one such programme in the supplementary material on bmj.com.
Fatigue
The profound and prolonged nature of fatigue in some post-acute covid-19 patients shares features with chronic fatigue syndrome described after other serious infections including SARS, MERS, and community acquired pneumonia.19202244 We found no published research evidence on the efficacy of either pharmacological or non-pharmacological interventions on fatigue after covid-19. Patient resources on fatigue management45 and guidance for clinicians on return to exercise43 and graded return to performance for athletes (box 4) 46 in covid-19 are currently all based on indirect evidence.
Box 4
The sportsperson returning to exercise (summarised from Stanford-Hall statement43)
Cardiopulmonary complications, assessment and management
Perhaps 20% of patients admitted with covid-19 have clinically significant cardiac involvement4950; occult involvement may be even commoner.5152 Cardiopulmonary complications include myocarditis, pericarditis, myocardial infarction, dysrhythmias, and pulmonary embolus; they may present several weeks after acute covid-19. They are commoner in patients with pre-existing cardiovascular disease,49 but they have also been described in young, previously active patients.435354 Various pathophysiological mechanisms have been proposed, including viral infiltration, inflammation and microthrombi, and down-regulation of ACE-2 receptors.515354
Chest pain
Chest pain is common in post-acute covid-19. The clinical priority is to separate musculoskeletal and other non-specific chest pain (for example, the symptom described by a large patient-led survey as “lung burn”4) from serious cardiovascular conditions. Clinical assessment of the post-acute covid-19 patient with chest pain should follow similar principles to that for any chest pain: a careful history, taking account of past medical history and risk factors, a physical examination, backed up as indicated by investigations (infographic).43 Where the diagnosis is uncertain, or the patient is acutely unwell, urgent cardiology referral may be needed for specialist assessment and investigations (including echocardiography, computed tomography of the chest, or cardiac magnetic resonance imaging).
Thromboembolism
Covid-19 is an inflammatory and hypercoagulable state,50 with an increased risk of thromboembolic events.5556 Many hospitalised patients receive prophylactic anticoagulation. Recommendations for anticoagulation after discharge vary, but higher risk patients are typically discharged from hospital with 10 days of extended thromboprophylaxis.57 If the patient has been diagnosed with a thrombotic episode, anticoagulation and further investigation and monitoring should follow standard guidelines.58 It is not known how long patients remain hypercoagulable following acute covid-19.
Ventricular dysfunction
Left ventricular systolic dysfunction and heart failure after covid-19 can be managed according to standard guidelines.59 Intense cardiovascular exercise must be avoided for three months in all patients after myocarditis or pericarditis; athletes are advised to take three to six months of complete rest from cardiovascular training followed by specialist follow-up, with return to sport guided by functional status, biomarkers, absence of dysrhythmias, and evidence of normal left ventricular systolic function.60
Neurological sequelae
Ischaemic stroke, seizures, encephalitis, and cranial neuropathies have been described after covid-19, but these all seem to be rare.61 A patient suspected of these serious complications should be referred to a neurologist. Common non-specific neurological symptoms, which seem to co-occur with fatigue and breathlessness, include headaches, dizziness, and cognitive blunting (“brain fog”).4 Until evidence based guidance appears on how to manage or when to refer such symptoms, we recommend supportive management and symptom monitoring in primary care.
The older patient
Covid-19 tends to affect older patients more severely.62 Those who survive are at high risk of sarcopenia, malnutrition, depression, and delirium.2 Post-covid-19 chronic pain may affect patients of any age but seems to be commoner in elderly patients.63 Physical symptoms add to the psychosocial impact of disrupted access to health care (such as arrangements for obtaining regular medication), core personal routines (such as walking to local shops), social interactions (such as meeting friends), and lay and professional support networks.64 Support should be personalised with input from the multi-professional team (for example, general practitioner, district nurse, social worker, rehabilitation teams, and occupational therapist as needed).
Mental health and wellbeing
Most publications on covid-19 and mental health have emphasised individual reactions to the pandemic such as anxiety, stress, and conditions related to broken routines, loneliness, and social isolation in uninfected individuals6566; the World Health Organisation has issued guidance on these.67 Lay accounts suggest that post-acute covid-19 is often associated with low mood, hopelessness, heightened anxiety, and difficulty sleeping.6 Post-traumatic stress disorder may occur, especially in healthcare workers and others with caring responsibilities.151643
While a minority of patients may benefit from referral to mental health services, it is important not to pathologise the majority. Physical manifestations of covid-19 may distort responses to assessment tools (such as the PHQ9) designed to measure anxiety and depression in a physically healthy population, though these complications may occur. Patient organisations emphasise wellbeing, mindfulness, social connection, self care (including diet and hydration), peer support, and symptom control. Mental illness is strongly associated with social determinants such as poverty, discrimination, and social exclusion; mental health and wellbeing are enhanced by increased social solidarity, informal social support, mutual aid, and other community based and collective measures.6869 Given how pervasive and unequal the impact of covid-19 has been,7071 community level, cross-sector collaborations may be needed to develop locally relevant solutions. A recent report from general practice in a deprived area of Glasgow describes the importance of accessible, relationship-based care for patients with complex needs, and of system-level interventions such as attached financial advisers and outreach mental health services.69
Social and cultural considerations
Covid-19 is more common and has a worse prognosis in the acute phase in people who are poor, elderly, and from certain minority ethnic groups (notably black, south Asian, and Jewish70). It is too early to say whether these sociodemographic patterns persist in post-acute covid-19. Our own experience suggests that patients with post-acute covid-19 are from diverse social and cultural backgrounds. Many have comorbidities including diabetes, hypertension, kidney disease, or ischaemic heart disease. Some have experienced family bereavements as well as job losses and consequent financial stress and food poverty. Strain on many carers has been high. For an important few, lockdown has worsened safeguarding concerns such as the risk of child or intimate partner abuse. A detailed discussion of all these issues is beyond the scope of this article, but there are strong arguments for working with other agencies to develop local, system-level solutions. Box 5 provides some links to covid-19 advice from specialist social care, lay care, and faith organisations.
Living with covid-19
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3392 (Published 03 September 2020)Cite this as: BMJ 2020;370:m3392
[email protected]
“Death is not the only adverse outcome of covid-19,” writes Nisreen Alwan, an epidemiologist who is experiencing a range of prolonged, fluctuating, and debilitating symptoms several months after her initial mild illness.1 Like a growing number of people around the world, she has what is being called post-acute or long covid.
While most people recover quickly and completely from the virus, stories of persistent and troubling symptoms have now moved from anecdote to the evidence of crowd sourced cohorts. Reports suggest that one in three people have not fully recovered several weeks after initial illness. A smaller but still substantial proportion have symptoms and difficulties that persist for months. These are not people who have been seriously ill in hospital, whose difficult journey to recovery is better understood.2 These are often physically fit, younger people who report persistent exercise intolerance, breathlessness and cough,3 anxiety, palpitations, and poor concentration. Paul Garner describes boom and bust—the illusion of recovery only to fall back into mental and physical exhaustion.4 These false dawns add to the burden for “long haulers,” he says, which for him includes intense fatigue, mood swings, muscle and joint pains, headaches, and brain fog.
One of the most distressing aspects of living with long covid, says Garner, is the dismissive attitude of some doctors. This may change as more doctors find themselves affected. So how should doctors respond to their patients struggling with this complex and worrying multisystem disorder? Trish Greenhalgh and colleagues recommend taking a whole person, pragmatic approach with symptom management that avoids overinvestigation.5 With so much uncertainty about the cause and course of long covid, a doctor’s key role is to be a witness, they say, “‘honouring the story’ of the patient whose protracted recovery is unexpected, alarming, and does not make sense.”
The challenge for those in charge of our public health response to covid-19 is to make sense of this emergent information. Policies and messaging must now reflect the risks to younger people of developing prolonged illness and multiple organ damage, especially in light of other new information about the risks of airborne transmission.67 For this, we need to be able to quantify the risks through proper population surveillance and to mitigate them with effective systems of rapid testing, tracing, isolation, and support.8 In the UK, at least, such crucial traditional public health approaches still seem a long way off.9
https://bmj.com/coronavirus/usage
Management of post-acute covid-19 in primary care
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3026 (Published 11 August 2020)Cite this as: BMJ 2020;370:m3026
Trisha Greenhalgh, professor of primary care health sciences1, et al
Correspondence to: T Greenhalgh [email protected]
What you need to know
- Management of covid-19 after the first three weeks is currently based on limited evidence
- Approximately 10% of people experience prolonged illness after covid-19
- Many such patients recover spontaneously (if slowly) with holistic support, rest, symptomatic treatment, and gradual increase in activity
- Home pulse oximetry can be helpful in monitoring breathlessness
- Indications for specialist assessment include clinical concern along with respiratory, cardiac, or neurological symptoms that are new, persistent, or progressive
Defining post-acute covid-19
In the absence of agreed definitions, for the purposes of this article we define post-acute covid-19 as extending beyond three weeks from the onset of first symptoms and chronic covid-19 as extending beyond 12 weeks. Since many people were not tested, and false negative tests are common,4 we suggest that a positive test for covid-19 is not a prerequisite for diagnosis.
How common is it?
Around 10% of patients who have tested positive for SARS-CoV-2 virus remain unwell beyond three weeks, and a smaller proportion for months (see box 1).7 This is based on the UK COVID Symptom Study, in which people enter their ongoing symptoms on a smartphone app. This percentage is lower than that cited in many published observational studies,89 whose denominator populations were those admitted to hospital or attending specialist clinics. A recent US study found that only 65% of people had returned to their previous level of health 14-21 days after a positive test.10
Box 1
A patient’s account
My wife, kids, and I all had symptoms of presumed covid-19 in early April 2020. They were soon fine, but I was more unwell and ended up in bed extremely fatigued, lethargic, and without appetite for four days.
The only person whose symptoms persisted was myself, and the fatigue which I had experienced was still lingering in the background. From this point onwards, it became difficult to engage fully in day to day activities with my normal energy levels. Exercise, of which I do a fair amount, was not at all possible.
I continued to feel like this for another three weeks, before finally feeling completely overwhelmed. This happened very quickly and without warning, resulting in me heading for bed immediately as I felt so bad. For the next 72 hours, I felt unwell in a way that was bordering on not coping. I was feverish, soaked with sweat to the point of having to regularly towel myself down, and with a persistent headache that had no relief in spite of increased doses of paracetamol or ibuprofen.
My chest was painfully tight, and my breathing was slightly erratic; I began to experience a shortness of breath in random waves that didn’t leave me gasping for air but certainly made me uncomfortable and very worried. My glands were swollen to the point that it was physically challenging to swallow, and this was only possible with severe discomfort. I felt physically exhausted, mentally drained, and, for the first time in my life, began to consider asking for additional help.
It was at this point that I noticed I had also not had any sense of smell for the past week, and this has continued to be the case since.
Overall, I spent seven days feeling like I had been knocked sideways. I rarely get unwell, and if I do it’s a fleeting fling with something that is usually seasonal and easily self medicated. This felt very different and was particularly challenging as there were points during my sickness that I was completely overwhelmed.
As far as recovery goes, it has now taken a full seven to eight weeks to start feeling close to my normal self again. In the aftermath of this, I have continued to experience the following: fatigued to the point of having to sleep in the day, inability to exercise, continued shortness of breath both motionless and when exerting, small waves of anxiety, considerable depression, continued loss of smell. These are all post-symptoms that I have had no experience or medical history with, and so it has been difficult to wrestle with the unexpectedness of them.
I’m back out doing moderate exercise now and glad to be through what has been a very difficult 12 week cycle from start to end.
Why are some people affected?
It is not known why some people’s recovery is prolonged. Persistent viraemia due to weak or absent antibody response,11 relapse or reinfection,12 inflammatory and other immune reactions,1314 deconditioning,2 and mental factors such as post-traumatic stress1516 may all contribute. Long term respiratory, musculoskeletal, and neuropsychiatric sequelae have been described for other coronaviruses (SARS and MERS),171819202122 and these have pathophysiological parallels with post-acute covid-19.23
What are the symptoms?
Post-acute covid-19 symptoms vary widely. Even so-called mild covid-19 may be associated with long term symptoms, most commonly cough, low grade fever, and fatigue, all of which may relapse and remit.47 Other reported symptoms include shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions.424 Skin rashes can take many forms including vesicular, maculopapular, urticarial, or chilblain-like lesions on the extremities (so called covid toe).25 There seems to be no need to refer or investigate these if the patient is otherwise well.
What tests are required?
Blood tests should be ordered selectively and for specific clinical indications after a careful history and examination (see infographic); the patient may not need any. Anaemia should be excluded in the breathless patient. Lymphopenia is a feature of severe, acute covid-19. Elevated biomarkers may include C reactive protein (for example, acute infection), white cell count (infection or inflammatory response), natriuretic peptides (for example, heart failure), ferritin (inflammation and continuing prothrombotic state), troponin (acute coronary syndrome or myocarditis) and D-dimer (thromboembolic disease). Troponin and D-dimer tests may be falsely positive, but a negative result can reduce clinical uncertainty. Further research is likely to refine the indications for, and interpretation of, diagnostic and monitoring tests in follow-up of covid-19.
For patients who were not admitted to intensive care, British Thoracic Society guidance on follow-up of covid-19 patients who have had a significant respiratory illness proposes community follow-up with a chest x ray at 12 weeks and referral for new, persistent, or progressive symptoms.26 For those with evidence of lung damage (such as persistent abnormal chest x ray and oximeter readings), referral to a respiratory service is recommended; subsequent early referral to pulmonary rehabilitation probably aids recovery.
Supporting recovery from covid-19
After excluding serious ongoing complications or comorbidities, and until the results of long term follow-up studies are available, patients should be managed pragmatically and symptomatically with an emphasis on holistic support while avoiding over-investigation.2 Fever, for example, may be treated symptomatically with paracetamol or non-steroidal anti-inflammatory drugs. Monitoring functional status in post-acute coivd-19 patients is not yet an exact science. A post-covid-19 functional status scale has been developed pragmatically but not formally validated27—a simplified version of this is reproduced in the supplementary material.
Referral to a specialist rehabilitation service does not seem to be needed for most patients, who can expect a gradual, if sometimes protracted, improvement in energy levels and breathlessness, aided by careful pacing, prioritisation, and modest goal setting. In our experience, most but not all patients who were not admitted to hospital recover well with four to six weeks of light aerobic exercise (such as walking or Pilates), gradually increasing in intensity as tolerated. Those returning to employment may need support to negotiate a phased return. Box 5 links to patient resources, including a comprehensive patient guide from Homerton University Hospital.28
Respiratory symptoms and support
Cough
The British Thoracic Society defines chronic cough as one that persists beyond eight weeks.26 Up to that time, and unless there are signs of super-infection or other complications such as painful pleural inflammation, cough seems to be best managed with simple breathing control exercises28 (see box 2) and medication where indicated (such as proton pump inhibitors if reflux is suspected).
Box 2
Breathing techniques
About 80% of the work of breathing is done by the diaphragm. After illness or general deconditioning, the breathing pattern may be altered, with reduced diaphragmatic movement and greater use of neck and shoulder accessory muscles. This results in shallow breathing, increasing fatigue and breathlessness, and higher energy expenditure. The “breathing control” technique is aimed at normalising breathing patterns and increasing the efficiency of the respiratory muscles (including the diaphragm) resulting in less energy expenditure, less airway irritation, reduced fatigue, and improvement in breathlessness.
The patient should sit in a supported position and breathe in and out slowly, preferably in through the nose and out through the mouth, while relaxing the chest and shoulders and allowing the tummy to rise. They should aim for an inspiration to expiration ratio of 1:2. This technique can be used frequently throughout the day, in 5-10 minute bursts (or longer if helpful).
Other breathing techniques—such as diaphragmatic breathing, slow deep breathing, pursed lip breathing, yoga techniques, Buteyko—are used in strategies to manage patients’ breathing patterns and breathlessness but require specialist advice to identify which technique best suits each patient.
RETURN TO TEXT
Breathlessness
A degree of breathlessness is common after acute covid-19. Severe breathlessness, which is rare in patients who were not hospitalised, may require urgent referral. Breathlessness tends to improve with breathing exercises (box 2). Pulse oximeters may be extremely useful for assessing and monitoring respiratory symptoms after covid-19, and we could find no evidence that their use in the home leads to increased anxiety (box 3).
Box 3
Use of pulse oximetry in post-acute covid-19
Hypoxia may reflect impaired oxygen diffusion and is a recognised feature of covid-19. It may be asymptomatic (so called silent hypoxia29) or symptomatic (reflecting increased work of breathing, or secondary pathology such as a bacterial pneumonia or thromboembolism). Oxygen saturation probes (pulse oximeters) have been used as part of a package of care for patients with covid-19 and are recommended as part of the assessment of acute covid-19 in national and local guidelines.303132
Self monitoring of oxygen saturations over three to five days may be useful in the assessment and reassurance of patients with persistent dyspnoea in the post-acute phase, especially those in whom baseline saturations are normal and no other cause for dyspnoea is found on thorough evaluation. An exertional desaturation test should be performed as part of baseline assessment for patients whose resting pulse oximeter reading is 96% or above but whose symptoms suggest exertional desaturation (such as light-headedness or severe breathlessness on exercise). In the absence of contraindications, such patients should be invited to repeat the oximeter reading after 40 steps on a flat surface (if self testing remotely) and then after spending one minute doing sit-to-stand as fast as they can (if supervised on site).33 A fall of 3% in the saturation reading on mild exertion is abnormal and requires investigation.33
Patients should be provided with a pulse oximeter and an observations diary and given instructions for how to self monitor.34 Typically, this would be a daily reading taken on a clean, warm finger without nail polish, after resting for 20 minutes; the device should be left to stabilise and the highest reading obtained should be recorded. While the range of commercially available oxygen saturation probes from healthcare suppliers and pharmacies seem to work within normal ranges (92% and above), smartphone apps that purport to measure oxygen saturations using the phone camera and torch should not be used.35
British Thoracic Society guidelines define the target range for oxygen saturation as 94-98% and a level of 92% or below as requiring supplementary oxygen (unless the patient is in chronic respiratory failure).36 In the context of a normal assessment (history, examination, and appropriate investigations) without red flags, an oxygen saturation of 96% or above and the absence of desaturation on exertional tests is very reassuring. Further investigation or referral in the first six weeks after covid-19 in such patients is rarely indicated, though regular support by telephone or video is likely to be appreciated. Oximeter readings persistently in the 94-95% range or below (indicating substantially farther down the oxygen-haemoglobin desaturation curve37) require assessment and investigation. The patient should be provided with safety-netting advice (such as contacting their general practice or NHS111) in the event of recurrent low saturation readings. Appropriate adjustments should be made for patients with lung disease and known hypoxia—in whom the range of 88-92% is considered acceptable.
Recovery after any severe debilitating illness may be prolonged.38 Survivors of covid-19 acute respiratory distress syndrome are at risk of long term impairment of lung function.394041 Serious interstitial lung disease seems to be rare in patients who are not hypoxic, though data on long term outcomes are not yet available.42
Pulmonary rehabilitation
Many patients are still recovering spontaneously in the first six weeks after acute covid-19 and do not generally require fast-track entry into a pulmonary rehabilitation programme. Those who have had significant respiratory illness may benefit from pulmonary rehabilitation, defined as “a multidisciplinary intervention based on personalised evaluation and treatment which includes, but is not limited to, exercise training, education, and behavioural modification designed to improve the physical and psychological condition of people with respiratory disease.”43 In the context of covid-19, rehabilitation is being delivered by various virtual models, including video linked classes and home education booklets with additional telephone support. We describe one such programme in the supplementary material on bmj.com.
Fatigue
The profound and prolonged nature of fatigue in some post-acute covid-19 patients shares features with chronic fatigue syndrome described after other serious infections including SARS, MERS, and community acquired pneumonia.19202244 We found no published research evidence on the efficacy of either pharmacological or non-pharmacological interventions on fatigue after covid-19. Patient resources on fatigue management45 and guidance for clinicians on return to exercise43 and graded return to performance for athletes (box 4) 46 in covid-19 are currently all based on indirect evidence.
Box 4
The sportsperson returning to exercise (summarised from Stanford-Hall statement43)
- 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. Avoid high-intensity training
- Persistent symptoms (such as fatigue, cough, breathlessness, fever): limit activity to 60% maximum heart rate until 2-3 weeks after symptoms resolve
- Patients who had lymphopenia or required oxygen need respiratory assessment before resuming exercise
- Patients who had cardiac involvement need cardiac assessment before resuming
Cardiopulmonary complications, assessment and management
Perhaps 20% of patients admitted with covid-19 have clinically significant cardiac involvement4950; occult involvement may be even commoner.5152 Cardiopulmonary complications include myocarditis, pericarditis, myocardial infarction, dysrhythmias, and pulmonary embolus; they may present several weeks after acute covid-19. They are commoner in patients with pre-existing cardiovascular disease,49 but they have also been described in young, previously active patients.435354 Various pathophysiological mechanisms have been proposed, including viral infiltration, inflammation and microthrombi, and down-regulation of ACE-2 receptors.515354
Chest pain
Chest pain is common in post-acute covid-19. The clinical priority is to separate musculoskeletal and other non-specific chest pain (for example, the symptom described by a large patient-led survey as “lung burn”4) from serious cardiovascular conditions. Clinical assessment of the post-acute covid-19 patient with chest pain should follow similar principles to that for any chest pain: a careful history, taking account of past medical history and risk factors, a physical examination, backed up as indicated by investigations (infographic).43 Where the diagnosis is uncertain, or the patient is acutely unwell, urgent cardiology referral may be needed for specialist assessment and investigations (including echocardiography, computed tomography of the chest, or cardiac magnetic resonance imaging).
Thromboembolism
Covid-19 is an inflammatory and hypercoagulable state,50 with an increased risk of thromboembolic events.5556 Many hospitalised patients receive prophylactic anticoagulation. Recommendations for anticoagulation after discharge vary, but higher risk patients are typically discharged from hospital with 10 days of extended thromboprophylaxis.57 If the patient has been diagnosed with a thrombotic episode, anticoagulation and further investigation and monitoring should follow standard guidelines.58 It is not known how long patients remain hypercoagulable following acute covid-19.
Ventricular dysfunction
Left ventricular systolic dysfunction and heart failure after covid-19 can be managed according to standard guidelines.59 Intense cardiovascular exercise must be avoided for three months in all patients after myocarditis or pericarditis; athletes are advised to take three to six months of complete rest from cardiovascular training followed by specialist follow-up, with return to sport guided by functional status, biomarkers, absence of dysrhythmias, and evidence of normal left ventricular systolic function.60
Neurological sequelae
Ischaemic stroke, seizures, encephalitis, and cranial neuropathies have been described after covid-19, but these all seem to be rare.61 A patient suspected of these serious complications should be referred to a neurologist. Common non-specific neurological symptoms, which seem to co-occur with fatigue and breathlessness, include headaches, dizziness, and cognitive blunting (“brain fog”).4 Until evidence based guidance appears on how to manage or when to refer such symptoms, we recommend supportive management and symptom monitoring in primary care.
The older patient
Covid-19 tends to affect older patients more severely.62 Those who survive are at high risk of sarcopenia, malnutrition, depression, and delirium.2 Post-covid-19 chronic pain may affect patients of any age but seems to be commoner in elderly patients.63 Physical symptoms add to the psychosocial impact of disrupted access to health care (such as arrangements for obtaining regular medication), core personal routines (such as walking to local shops), social interactions (such as meeting friends), and lay and professional support networks.64 Support should be personalised with input from the multi-professional team (for example, general practitioner, district nurse, social worker, rehabilitation teams, and occupational therapist as needed).
Mental health and wellbeing
Most publications on covid-19 and mental health have emphasised individual reactions to the pandemic such as anxiety, stress, and conditions related to broken routines, loneliness, and social isolation in uninfected individuals6566; the World Health Organisation has issued guidance on these.67 Lay accounts suggest that post-acute covid-19 is often associated with low mood, hopelessness, heightened anxiety, and difficulty sleeping.6 Post-traumatic stress disorder may occur, especially in healthcare workers and others with caring responsibilities.151643
While a minority of patients may benefit from referral to mental health services, it is important not to pathologise the majority. Physical manifestations of covid-19 may distort responses to assessment tools (such as the PHQ9) designed to measure anxiety and depression in a physically healthy population, though these complications may occur. Patient organisations emphasise wellbeing, mindfulness, social connection, self care (including diet and hydration), peer support, and symptom control. Mental illness is strongly associated with social determinants such as poverty, discrimination, and social exclusion; mental health and wellbeing are enhanced by increased social solidarity, informal social support, mutual aid, and other community based and collective measures.6869 Given how pervasive and unequal the impact of covid-19 has been,7071 community level, cross-sector collaborations may be needed to develop locally relevant solutions. A recent report from general practice in a deprived area of Glasgow describes the importance of accessible, relationship-based care for patients with complex needs, and of system-level interventions such as attached financial advisers and outreach mental health services.69
Social and cultural considerations
Covid-19 is more common and has a worse prognosis in the acute phase in people who are poor, elderly, and from certain minority ethnic groups (notably black, south Asian, and Jewish70). It is too early to say whether these sociodemographic patterns persist in post-acute covid-19. Our own experience suggests that patients with post-acute covid-19 are from diverse social and cultural backgrounds. Many have comorbidities including diabetes, hypertension, kidney disease, or ischaemic heart disease. Some have experienced family bereavements as well as job losses and consequent financial stress and food poverty. Strain on many carers has been high. For an important few, lockdown has worsened safeguarding concerns such as the risk of child or intimate partner abuse. A detailed discussion of all these issues is beyond the scope of this article, but there are strong arguments for working with other agencies to develop local, system-level solutions. Box 5 provides some links to covid-19 advice from specialist social care, lay care, and faith organisations.
Living with covid-19
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3392 (Published 03 September 2020)Cite this as: BMJ 2020;370:m3392
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“Death is not the only adverse outcome of covid-19,” writes Nisreen Alwan, an epidemiologist who is experiencing a range of prolonged, fluctuating, and debilitating symptoms several months after her initial mild illness.1 Like a growing number of people around the world, she has what is being called post-acute or long covid.
While most people recover quickly and completely from the virus, stories of persistent and troubling symptoms have now moved from anecdote to the evidence of crowd sourced cohorts. Reports suggest that one in three people have not fully recovered several weeks after initial illness. A smaller but still substantial proportion have symptoms and difficulties that persist for months. These are not people who have been seriously ill in hospital, whose difficult journey to recovery is better understood.2 These are often physically fit, younger people who report persistent exercise intolerance, breathlessness and cough,3 anxiety, palpitations, and poor concentration. Paul Garner describes boom and bust—the illusion of recovery only to fall back into mental and physical exhaustion.4 These false dawns add to the burden for “long haulers,” he says, which for him includes intense fatigue, mood swings, muscle and joint pains, headaches, and brain fog.
One of the most distressing aspects of living with long covid, says Garner, is the dismissive attitude of some doctors. This may change as more doctors find themselves affected. So how should doctors respond to their patients struggling with this complex and worrying multisystem disorder? Trish Greenhalgh and colleagues recommend taking a whole person, pragmatic approach with symptom management that avoids overinvestigation.5 With so much uncertainty about the cause and course of long covid, a doctor’s key role is to be a witness, they say, “‘honouring the story’ of the patient whose protracted recovery is unexpected, alarming, and does not make sense.”
The challenge for those in charge of our public health response to covid-19 is to make sense of this emergent information. Policies and messaging must now reflect the risks to younger people of developing prolonged illness and multiple organ damage, especially in light of other new information about the risks of airborne transmission.67 For this, we need to be able to quantify the risks through proper population surveillance and to mitigate them with effective systems of rapid testing, tracing, isolation, and support.8 In the UK, at least, such crucial traditional public health approaches still seem a long way off.9
https://bmj.com/coronavirus/usage