Approximately 10% of individuals who test positive for the SARS-CoV-2 virus remain unwell after the first 3 weeks, and a smaller number continue to be symptomatic with a diverse range of symptoms persisting for over 12 weeks (Greenhalgh et al, 2020). The National Institute for Health and Care Excellence (NICE) outlines that anyone with symptoms lasting more than 4 weeks after an acute presentation of COVID-19 and anyone with persistent symptoms continuing more than 12 weeks are considered to have post COVID-19 syndrome (NICE, 2020). The diagnosis of post-acute COVID-19 should not depend on patients having a confirmed diagnosis of acute COVID-19. The term ‘long COVID’ is synonymous with post-acute COVID-19 syndrome, and it is now a recognised term in the scientific literature.
A significant number of people continue to exhibit a wide range of symptoms following the acute infection stage. The five key long-term symptoms that have been identified are breathlessness, cough, fatigue and muscle and joint pain. The present article focuses on exploring what is known about the persistent breathlessness related to post-acute COVID-19.
Incidence of long COVID
Any patient with COVID-19 may go onto develop long COVID regardless of the severity of the initial infection and the intensity of the treatment received (Crook et al, 2021). Post-viral syndrome has been recognised before the recent pandemic in other outbreaks of human coronavirus diseases. The symptoms of fatigue, myalgia, psychiatric impairment and severe acute respiratory syndrome (SARS) lasting for up to 4 years have been reported (Yong, 2021). There is emerging evidence that patients admitted to intensive care or hospital with acute COVID symptoms may have more severe long COVID following discharge, but even non-hospitalised patients can develop the syndrome.
The Office for National Statistics (ONS) (2021) estimated that 1.5% of the population are living with symptoms of long COVID. This is based on a representative survey of UK households from individuals with self-reported long Covid symptoms. Some 89% of respondents with long Covid symptoms first had a confirmed diagnosis or self-diagnosed acute COVID-19 infection at least 12 weeks previously, and 40% of respondents with ongoing long COVID symptoms first self-diagnosed or had a confirmed diagnosis of acute COVID-19 infection at least 1 year previously (ONS, 2021).
Pathophysiology relating to respiratory symptoms of long COVID
Long COVID appears to manifest as a multi-system disease and can be very debilitating. There are wide variations in the associated symptoms (Greenhalgh et al, 2020). It would appear that, although the mechanisms involved are not well understood, long covid affects multiple organs but especially the lungs and heart (Yong, 2021). The precise duration of long COVID is unknown, and patients with the syndrome can have continuous symptoms or can complain of relapsing and remitting symptoms (Nabavi, 2020).
There is limited literature available outlining the precise pathophysiology of this condition. The virus responsible for causing COVID-19, SARS-CoV-2 enters the cells via angiotensin-converting enzyme 2 (ACE2) receptors. ACE2 is a protein on the surface of many cell types that are scattered throughout the body, and, during the initial infection, the virus uses the spike-like protein on its surface to bind to ACE2, and this acts as a receptor for the virus to enter the cells. Once internalised, the virus replicates, matures and provokes an inflammatory response. This involves the activation and infiltration of immune cells by various cytokines in some individuals (Parasher, 2021).
The majority of patients with long COVID symptoms test negative in the polymerase chain reaction (PCR) test negative and highlight a time lag between microbiological and clinical recovery. In long COVID, the reasons for persistent and ongoing symptoms appear to be multifactorial and there are a number of factors contributing to the symptoms experienced by individuals with this condition.
The exact mechanism behind the persistence of symptoms seen in long COVID should be identified if possible. A wide range of causes relating to long COVID have been identified (Yong, 2021). This includes organ damage, chronic inflammation, the nonspecific effect of hospitalisation, critical illness and post-intensive care syndrome, persistent viraemia and complications related to underlying long-term conditions or to treatments used during episodes leading to adverse drug reactions (Raveendran et al, 2021).
A number of studies have followed up COVID-19 survivors and reported on pulmonary radiological abnormalities and functional impartment. One follow-up study of 58 patients who had been admitted to an acute setting with initial infection found that at 2–3 months from disease onset, 64% of the study participants experienced breathlessness, and MRI abnormalities were seen in the lungs of 60% of patients (Raman et al, 2021). A separate observational study followed up 110 patients at between 8 and 12 weeks post-admission (Arnold et al, 2020). A key finding of this study was that nearly three-quarters of the patients remained symptomatic at 3 months, and that clinical abnormalities were rare in individuals who had had mild symptoms during the acute phase of infection. A further important finding was that patients complained of ongoing fatigue and breathlessness and a reduced health-related quality of life (Arnold et al, 2020).
A recent systematic review and meta-analysis (Cares-Marambio, 2021) focused on respiratory symptoms in long COVID. The review highlighted a range of persistent respiratory symptoms. The authors identified the wide variations in patient characteristics, severity of initial infection during acute admission and underlying comorbidities of the patients included the range of research papers reviewed. Interestingly, patient-reported respiratory symptoms are not correlated with any underlying pathophysiological respiratory changes that can be attributed to damage incurred during acute COVID-19. Some nine of the studies reported dyspnoea, seven studies reported on cough and five studies reported on chest pain among the 1816 patients who were included in the review. These three symptoms were identified as prevalent respiratory symptoms for posthospital survivors. Although fatigue is not predominately a respiratory symptom, it can be considered a multidimensional problem that frequently overlaps with dyspnoea and is commonly assessed in chronic respiratory diseases.
Community nurses' role in assessment of long COVID-related breathlessness
Long COVID significantly impacts the respiratory system, and some individuals will suffer ongoing lung tissue damage-patients with documented lung damage and should be followed up by respiratory specialist services. Most individuals will have no signs of permanent lung damage (Crook et al, 2021). Community nurses routinely care for patients recovering from long COVID and need to know how to support individuals presenting with cough and breathlessness, accompanied by fatigue, and an inability to exercise. It is especially important for community nurses to be alert to possible causes of a gradual decline, deconditioning and worsening frailty syndrome, as these can be signs of long COVID (NICE, 2020).
At the heart of the community nurses' care response is a comprehensive person-centred assessment. The community nurse will need to work closely with the person and the GP in order to agree a care plan that reflects evidence-based best practice and supports the individual with palliation of symptoms and recovery.
Breathlessness
Understanding some of the complexities that are associated with breathlessness will support the community nurse in adopting a holistic approach in breathlessness management. Ongoing breathlessness is a distressing symptom and is often characterised by rapid respiratory rate and difficulties in breathing. There is a poor correlation between breathlessness and lung function, and there may be no underlying pathophysiological processes causing breathlessness. The experience of breathlessness is complex, and a range of non-physiological factors, including emotional, environmental, cultural and social, influences the experience of breathlessness (Bajwah et al, 2020). In breathlessness, patients struggle ‘to get more air in’ and take short, shallow breaths using only the top parts of the lungs. This can lead to the development of inefficient breathing patterns accompanied by anxiety, resulting in a reduced quality of life and wellbeing (Marshall, 2020).
Spathis et al (2017) proposed that breathlessness is conceptualised as a triad that links breathing, thinking/feeling and functioning together. This model can be used to understand the effects of breathlessness, illustrating how the breathlessness symptom triggers a vicious circle that worsens or maintains breathlessness symptoms. The subjective experience of breathlessness for an individual results in inefficient breathing patterns and an increased respiratory rate. This influences negative thoughts about the symptom and is associated with fear and anxiety. This, in turn, leads the individual to adopt fear-avoidance behaviours, reduced activity, a tendency to self-isolate and become more functionally dependent.
It is important to recognise that breathlessness may not be reversable but that it is treatable (Booth and Johnson, 2019).
Respiratory assessment
The community nurse can use simple, open-ended questions that can help establish the impact of breathlessness on the individual's everyday life. Simple questions can elicit how the individual is affected by the symptom, what triggers are associated with the symptom, how it makes the person feel and what helps alleviate it and how it has impacted on day-to-day life (Marshall, 2020).
It is important for the community nurse to establish a baseline that accurately assesses the patient's condition. Ongoing monitoring will detect early signs of sudden deterioration that may require urgent referral onto specialist care. The community nurse must assess and eliminate red flags during the assessment (Box 1).
Box 1.Red flags that might be observed during assessment
| Establishing a baseline and ongoing monitoring signs of deteriorating condition |
| Breathlessness is associated with a number of acute and long-term conditions, so it is important that community nurses are assured that the underlying cause is identified and there is diagnostic certainty for the cause of breathlessness symptoms. |
| Any new onset of breathlessness or sudden deterioration and worsening of symptoms warrants urgent referral on in order to exclude new pathology. |
| Any patient presenting with severe hypoxaemia, oxygen desaturation on exercise or with signs of severe lung disease, or chest pain that is cardiac in origin should be urgently referred on to acute services (NICE, 2020) |
Assessment involves monitoring the respiratory rate, ideally for 60 seconds, while ensuring that the patient is not aware of monitoring. Further, observation of the person's breathing pattern, use of accessory muscles and signs of cyanosis and noting the depth and symmetry of breathing are fundamental respiratory assessment skills.
Hypoxaemia is generally defined as a measured oxygen saturation level in the blood of below 94% in the absence of lung disease and below 88% for patients with chronic lung disease (O'Driscoll et al, 2017). NICE (2020) advised that pulse oximetry can be considered in supporting self-monitoring at home if this is agreed as part of the person's assessment. The community nurse may routinely monitor pulse oximetry, and it is important that the readings are taken accurately in line with best practice recommendations (Box 2). The target range should be agreed and set for each individual. Ongoing monitoring requires the establishment of acceptable parameters and an escalation plan so that readings outside set parameters are appropriately actioned.
Box 2.Best practice in pulse oximetry
| Use a warm finger—a cold finger may give a false low reading |
| The patient should be sitting upright, and the reading taken in a resting state |
| The pulse oximeter should be kept on for a minute to allow the reading to stabilise |
| Nail polish, tattoos and false nails will affect the accuracy of the reading |
| Hypotension, anaemia, sickle cell and cardiac failure may give an inaccurate reading |
| In patients with dark skin be aware that pulse oximetry readings may be inaccurate and any change in baseline should be closely monitored |
| Target range for pulse oximetry is usually between 94% and 98% |
| A drop of 3% or more below what is normal for the patient warrants further assessment and a drop of 4% or more may require hospital admission |
Adapted from O'Driscoll et al (2017) and Greenhalgh et al (2021)
NICE (2020) recommended a range of investigations for individuals with ongoing long COVID symptoms. Anyone with ongoing respiratory symptoms lasting 12 weeks post-acute infection or more should receive a chest X-ray. Blood tests include a full blood count, kidney and liver function tests, C-reactive protein test, ferritin, B-type natriuretic peptide (BNP) and thyroid function tests. If appropriate, an exercise tolerance test suited to the person's ability should be undertaken.
A number of tools can be used in the assessment of breathlessness, as illustrated in Box 3. The Medical Research Council (MRC) Dyspnoea scale has been used for many years for grading the severity of breathlessness and how this symptom affects everyday activities. It uses a scale from 1 to 5. This tool can be used by the patient and nurse to establish how breathlessness is affecting the person's mobility.
Box 3.MRC Dyspnoea Scale
| Grade 1: Is the patients' breath as good as that of other men of his age and build at work, on walking, and on climbing hills or stairs? |
| Grade 2: Is the patient able to walk with normal men of own age and build on the level but unable to keep up on hills or stairs? |
| Grade 3: Is the patient unable to keep up with normal men on the level, but able to walk about a mile or more at his own speed? |
| Grade 4: Is the patient unable to walk more than about 100 yards on the level without a rest? |
| Grade 5: Is the patient breathless on talking or undressing, or unable to leave his house because of breathlessness? |
Note: Used with permission from the Medical Research Council (MRC). Available to download from: https://tinyurl.com/pevbfbuv
Nonpharmacological techniques to manage breathlessness
Individuals experiencing ongoing breathlessness can be supported with treatments traditionally used by individuals living with a wide range of chronic lung diseases.
Pulmonary rehabilitation is widely available and has compelling evidence of clinical effectiveness in improving breathlessness, exercise tolerance and quality of life for chronic obstructive pulmonary disease. This intervention has been recommended for supporting long COVID recovery (Hayes, 2021).
The Stanford-Hall consensus statement for post COVID-19 rehabilitation (Barker-Davies et al, 2020) identified the urgent need for clear guidance on the rehabilitation of COVID-19 survivors. The group developed a consensus statement that recommends that rehabilitation plans should be individualised according to patient need and that patients require education about their condition and should be given strategies on how to manage their recovery. It can be argued that community nurses are ideally situated to support these recommendations.
Table 1. Useful resources
| Authors | Title/link | Comments |
|---|---|---|
| Queen's Nursing Institute | Living with COVID-19 (long COVID) and beyond (https://tinyurl.com/72mw3xa5) | This is a 19-page booklet and has been developed as a community and primary care nursing Resource in order to provide information to community nurses about the impact of acute and long COVID on the patient |
| British Lung Foundation | https://tinyurl.com/4hxyschu | This is a series of resources to support patients with managing breathlessness, cough and a video on breathing control |
| British Thoracic Society | https://tinyurl.com/28s7z2zb | COVID-19 information for the respiratory community that contains detailed clinical guidelines outlining best practice recommendations in the ongoing management of this condition |
| NHS England | National guidance for post-COVID syndrome assessment clinics (https://tinyurl.com/rdmxz9kx) | Post-COVID syndrome assessment clinics (long COVID clinics) have been set up throughout the country. The aim is to provide specialist multidisciplinary services for patients to aid recovery |
| British Thoracic Society | BTS guidance on respiratory follow up of patients with a clinico-radiological diagnosis of COVID-19 pneumonia (https://tinyurl.com/5fd2bm3u) | Clinical guidelines and relevant for individuals with breathlessness related to lung pathology |
| NHS | https://tinyurl.com/4zy54k54 | Self-referral to Improving Access to Psycological Therapies services |
| Royal College of Occupational Therapists | https://tinyurl.com/3692uynv | Top tips on conservation of energy |
| NHS | https://tinyurl.com/v36aj8t9 | A web resource aimed at supporting COVID recovery, and breathlessness is specifically addressed |
Community nurses can address breathlessness symptoms by learning more about techniques and using the range of resources outlined in Table 4. The NHS has developed a web-based resource outlining a road to recovery for anyone recovering from acute and long COVID. Conservation of energy is a key principle in recovery. Symptomatic individuals are encouraged to pace, plan and prioritise, and community nurses can use this resource as a focus for priority setting. More in-depth advice and information is available from the Royal College of Occupational Therapists' website.
Referral on to psychological therapy may be helpful, and individuals can self-refer to Improving Access to Psychological Therapy (IAPT) services.
Breathing control, breathing exercises and relaxation techniques are all useful tools to control breathing. The British Lung Foundation has a video and a leaflet explaining these techniques. There are some easy supportive techniques that may help, such as mindfulness, visualisation and simple measures, such as relaxing the shoulders, sitting upright and leaning forward with the arms resting; these measures are illustrated on the COVID recovery website. Keeping the environment cool and using cold wipes on the face can ease the sensation of breathlessness (Bajwah et al, 2020). The use of a fan is not advocated because of the theoretical risk of spreading the virus (NICE, 2020).
Referral onto specialist services may be required for persistent and severe intractable symptoms (Marshall, 2020).
Conclusion
The emergence of long COVID has led to a number of important priorities for ongoing research in order to learn more about how individuals can be best supported in their recovery journey, and the emerging evidence will inform best practice in how best to provide ongoing care.
In the meantime, community nurses have a pivotal role to play in the ongoing care and recovery of individuals with long COVID. This includes support for the management of breathlessness, regular monitoring and promoting rehabilitation, reconditioning and wellbeing. This role encompasses working in partnership with the individual and their supporters alongside other primary care services and by being fully informed of local services that support the person's recovery journey.
KEY POINTS
- Approximately 10% of people experience prolonged symptoms following acute COVID-19 infection. All individuals with a suspected or confirmed diagnosis of acute covid should be asked about ongoing symptoms relating to long COVID
- The terms post-COVID-19 syndrome and long COVID are synonymous and the term long covid is increasingly used by professionals and patients alike
- People recovering from long COVID frequently present with a range of diverse symptoms that commonly include breathlessness and cough accompanied by fatigue
- Ongoing research is being undertaken to identify and understand the impact of acute and long COVID on respiratory health.
- Community nurses have a role in supporting individuals with long COVID in monitoring and supporting recovery.
CPD REFLECTIVE QUESTIONS
- Reflect on patients on your case load with symptomatic long covid—what are their support needs and how can you support with recovery?
- What routine observations are you undertaking to measure long covid related symptoms and does this reflect best practice?
- How do you monitor patients with breathlessness and what interventions might improve symptoms of breathlessness, cough and fatigue?
- A number of services are available to support patient recovery from long covid—what services are available locally and how can patients access them?