Most COVID-19 research, policy and guidance focuses on prevention of the spread of infection and management of acute disease (Vittori et al, 2020). However, months into the pandemic, there is a need for nurses to understand how to support recovery from COVID-19. At the time of press, the total number of laboratory-confirmed cases of COVID-19 in the UK (first recorded in March 2020) is 1 430 341 and there have been 63 873 deaths (Public Health England, 2020). It should be noted that the method of calculating these statistics was changed by the UK Government in July 2020 due to controversy over reporting methods (Office for National Statistics, 2020). Mortality rates vary across age groups with older people over the age of 70 years more likely to die (7.8%) from the disease; overall mortality has been estimated at 0.66% (Mahase, 2020). The total number of UK hospital admissions due to COVID-19 reported to date is 198 185, and there are currently 1420 patients on ventilation (Public Health England, 2020). This article discusses current understanding and the management and prevention of potential longer-term physical and mental health effects of COVID-19.
What do we know about recovery from COVID-19?
COVID-19 is a new disease, so very little is known about its long-term effects. It might be expected that these effects would be more severe in the 5% of COVID-19 patients who become so severely ill that they are admitted to an intensive care unit (ICU) (Yang et al, 2020). Long-term consequences of critical care have been identified, they include: cognitive impairment, anxiety, depression, post-traumatic stress disorder (PTSD), decreased quality of life and physical disability (Sevin et al, 2018). The term for new or worsened mental health, cognitive or physical impairments after treatment in ICU is ‘post-intensive care syndrome’ (PICS), although no diagnostic criteria have been established (Lee et al, 2020).
Of the COVID-19 patients admitted to ICU, about two-thirds will develop acute respiratory distress syndrome (ARDS) and about 25% of these patients will survive (Yang et al, 2020). ARDS is a type of respiratory failure characterised by rapid onset of widespread inflammation in the lungs that often requires treatment by tracheal intubation and mechanical ventilation (Vittori et al, 2020). The effects of surviving ARDS include persistent fatigue, weakness and limited exercise tolerance (defined as the distance walked in 6 minutes) (Bein et al, 2018). Up to a third of ARDS survivors also develop PTSD (Herridge et al, 2003). Many of these effects have been found to be long-term: in one small study (n=75) (Sanfilippo et al, 2019), ARDS survivors treated with veno-venous extracorporeal membrane oxygenation (VV-ECMO) (n=50) showed reduced health-related quality-of-life and high risk of psychological impairment, in particular PTSD, at 3 years follow-up.
Hospitalised patients with COVID-19 also appear to be at an increased risk of developing blood clots, which have been documented in 20-30% of patients (Poissy et al, 2020; Zheng et al, 2020). The mechanisms to explain this phenomenon and its prognosis are yet to be understood (Willyard et al, 2020). However, the long-term effects (ie stroke and organ failure) and other persistent physical changes, such as heart and lung function and cognitive function, are likely to have an impact on recovery. Most patients will experience a period of adjustment to living with a chronic illness, and nurses can help by providing self-management support (Schulman-Green et al, 2012) and referral to appropriate members of the multidisciplinary team. An unknown proportion of patients who experience severe COVID-19 will need to adjust to living with a new long-term condition.
Relatively recently, anecdotal evidence (Hinde, 2020) suggested that, even in those who are not ill enough to require hospital treatment, the length of recovery varies and, for some, may involve chronic or intermittent symptoms. For example, among the first to comment publicly on this, Professor Paul Garner described a 7 week ‘roller coaster of ill health, extreme emotions, and utter exhaustion’ following presumed COVID-19 infection (Garner, 2020). This pattern of ill health has since been termed ‘long COVID’.
Systematic data concerning the course of, and recovery from, COVID-19 are only now being gathered. Preliminary international data suggest that the median time from onset to clinical recovery for mild cases is approximately 2 weeks, and 3–6 weeks for patients with severe or critical disease (World Health Organization (WHO), 2020). Data from the COVID Symptom study app from ZOE (https://covid.joinzoe.com/post/long-covid) suggest that 1 in 20 people experience symptoms lasting more than 8 weeks. Evidence from studies following the severe acute respiratory syndrome (SARS) outbreak in 2002 may help inform this data as SARS is caused by a coronavirus (SARS-CoV) related to the virus that causes COVID-19 (SARS-CoV-2). One case-controlled study (Moldofsky et al, 2011) of 22 people who, after an average of 19 months post-SARS, had not been able to return to their usual occupation found reports of pain, weakness, depression and sleep disturbance to be similar to those of 21 women meeting criteria for fibromyalgia. Fibromyalgia is a disorder characterised by musculoskeletal pain, fatigue, sleep, memory and mood issues for at least 3 months, which sometimes begins following physical trauma, surgery, infection or significant psychological stress (Wolfe et al, 2010).
Lam et al (2009) found that of 233 SARS survivors, more than 40% reported psychiatric morbidities or fatigue 4 years post-infection. Furthermore, Herridge et al (2003) found that only 16% of ARDS survivors returned to work 3 months after ICU discharge, 32% after 6 months, and 49% after 12 months. However, not all individuals experience long-term or severe effects; so understanding who might be affected would help nurses target their advice, management support and referrals for further care to patients post-COVID-19.
Which patients might experience problems post-COVID-19?
The longer-term effects of COVID-19 will likely vary in intensity and duration between individuals. Studies of survivors of ICU (Lee et al, 2020; Herridge et al, 2016), ARDS (Herridge et al, 2003), SARS (Lam et al, 2009) and COVID-19 (Jin et al, 2020; Platt and Warwick, 2020) have examined predictors of negative outcomes. In a systematic review of 89 studies (Lee et al, 2020), older age, female sex, previous mental health problems, disease severity, negative ICU experience and delirium were associated with the development of PICS. Greater disability and deaths 1 year post-ICU discharge have been found to be associated with older age and longer stay (Herridge et al, 2016). In patients who developed ARDS from any cause, those with PTSD were more likely to be elderly with pre-existing depression or to come from a low socioeconomic group (Herridge et al, 2003). Post-SARS risk factors for mental health problems included being a healthcare worker at the time of infection, being unemployed at follow-up, having a perception of social stigmatisation and having applied to a SARS survivors' fund; the last was also a predictor for chronic fatigue (Lam et al, 2009). In the short-term, worse COVID-19 outcomes have also been associated with being male (Jin et al, 2020) and coming from a black or minority ethnic background (BAME) (Platt and Warwick, 2020); the impact of these characteristics on longer-term recovery is not yet known.
The available research therefore suggests that some groups (ie older, of lower socioeconomic status, with pre-existing conditions, from a BAME background or after a longer stay in hospital or ICU) may be at greater risk of poor outcomes post-COVID-19. However, there are insufficient data to predict exactly who may have a more complicated or longer recovery. Those discharged from hospital and, in particular, ICU will require a programme of multidisciplinary rehabilitation and long-term follow-up. Guidance as to what this may include may be informed by existing research into interventions to improve recovery in those who have been treated in ICU.
Supporting recovery following ICU admission
A number of recovery support programmes for those discharged from ICU have been developed (McPeake et al, 2017; Sevin et al, 2018; Bakhru et al, 2018; Haines et al, 2019); however, there is a lack of randomised controlled trial evidence testing their effectiveness. A qualitative study of 66 diverse patients (McPeake et al, 2020) considered five key components to be effective:
Additionally, improving the patient experience and treatment of delirium may help prevent problems in the long term. However, recovery support programmes are not universally available and best practice for improving ICU experience is not yet clear. Nurses may wish to direct patients to ICU Steps (Box 1), a national charity set up to support ICU survivors. An important area for research will be understanding how to support the recovery of those COVID-19 survivors who have been discharged from ICU and whether this differs from other groups.
Supporting recovery in other patients
Whether or not patients have been treated in ICU, recovery from COVID-19 is likely to be complicated in people with comorbidities, such as hypertension or diabetes as they are associated with worse clinical outcomes. Having more than one comorbidity is especially linked to poor outcomes (Guan et al, 2020). The management of long-term effects of COVID-19 may therefore be in the context of the management of multi-morbidity. It is probable that, for most people, recovery from COVID-19 will take only 1–2 weeks (WHO, 2020); patients should be advised to rest, follow good nutrition and hydration and take over-the-counter medications such as paracetamol. For those who may have ‘long COVID’, data from the COVID Symptom Study app from ZOE suggest that there are two groups: one dominated by respiratory symptoms such as cough and shortness of breath, as well as fatigue and headaches, and another ‘multi-system’ group, where many parts of the body including the brain, gut and heart are affected. The NHS has announced that it is launching a network of more than 40 ‘long COVID’ specialist clinics to help affected individuals (NHS England, 2020). From the above studies it appears, however, that the common effects across all groups recovering from COVID-19 include fatigue and mental health problems, nurses are well placed to advise patients on how to avoid or manage these.
Management of fatigue post COVID-19
Post-viral fatigue (PVF) can range from tiredness to extreme exhaustion (Ahlberg et al, 2003) and is relatively common after many viral illnesses. Most people will gradually return to normal functioning within a few weeks (WHO, 2020). Persistent fatigue, which continues for about 4 months and interferes with the person's capacity to carry out their day-to-day activities may lead to a diagnosis of post-viral fatigue syndrome (PVFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) (National Institute for Health and Care Excellence, 2007). Patients experiencing this prolonged fatigue should be referred to their GP for further investigation and specialist management. The ME Association website also offers useful information (Box 1). It is important for nurses, and all healthcare providers, to remember that PVFS and other medically unexplained syndromes (MUS) are poorly understood and that distrust can develop between patients and health professionals if symptoms are dismissed as ‘all in the mind’ (Dirkzwager and Verhaak, 2007).
The experience of fatigue in most people can be minimised by ensuring that the return to normal activities, including work, is gradual (Kos et al, 2015). Nurses should encourage patients to ‘pace themselves’ by using behavioural strategies, such as prioritising, goal setting and action planning (ie setting small achievable goals and a manageable strategy as to how these can be achieved), gradually increasing exercise, taking scheduled breaks and practising good sleep hygiene. For some patients who work, a phased return or temporary change of role to minimise the need to undertake particularly strenuous activities may be required. Nurses can support patients to approach their employers, many of whom will have sickness/absence policies which cover this.
Whatever their situation, patients should be advised not to ‘push through fatigue’ but to ‘listen to their body’ and to stop before they become tired (Kos et al, 2015). Patients should be encouraged to manage expectations and ‘sit with’ rather than ‘act on’ self-critical thoughts, which might encourage over-exertion such as ‘I should be able to do more’ or ‘I am useless if I can't achieve what I could before’. Paying attention to thoughts and emotions and how they can influence behaviour is key to managing mental health (Hayes and Hofmann, 2017) including during recovery from COVID-19.
Management of mental health needs post-COVID-19
A systematic review synthesised findings from 72 published studies (n=>3500 participants) reporting psychiatric and neuropsychiatric presentations of individuals with coronavirus infection (COVID-19, SARS, MERS) (Rogers et al, 2020). Most data come from those who had severe illness. A quarter of participants experienced confusion or delirium, a third developed PTSD, a third had depression or anxiety, which improved after the acute phase and at 1-year following the acute phase, and around 15% reported depression and anxiety. So, although most people will recover, a proportion will require mental health support.
Mental health conditions, such as PTSD, major depressive disorder or anxiety disorders require specialist treatment. Nurses may direct patients concerned about PTSD to an online support tool (Whalley and Kaur, 2020). Screening tools can be employed by nurses to identify those patients who may need referral for specialist assessment. Simple tools such as GAD7 for anxiety (Spitzer et al, 2006), PHQ9 for depression (Kroenke et al, 2001) and TSQ for post-traumatic stress symptoms (Brewin et al, 2002) are recommended (British Psychological Society (BPS), 2020). BPS has published guidance on meeting the likely psychological needs of people who have been hospitalised with severe coronavirus (BPS, 2020). Key points include providing clear information on discharge, scheduling an appropriate early follow-up appointment and implementing a multidisciplinary rehabilitation package, guided self-help and referral to specialist mental health services such as Improving Access to Psychological Therapies (IAPT) for those with clinically significant difficulties.
Apart from those who have been hospitalised, data from an ongoing population study (n=>90 000) conducted by University College London (Fancourt et al, 2020) indicates that people who had mental health problems prior to the coronavirus pandemic are at risk of deteriorating mental health during lockdown. Data from this study are being released week-by-week and data comparing those who report having COVID-19 and those who say they have not had it are not yet available. The impact of mild disease on mental health is unknown. Careful monitoring by nurses of changes in the mental health status of patients with a history of mental health difficulties is clearly needed, with referral to stepped care as required.
A list of common psychological aspects of recovery identified by an expert panel (BPS, 2020), and which may be expected to apply to hospitalised and non-hospitalised COVID-19 patients, is shown in Box 2.
Such symptoms may be exacerbated by other effects of the pandemic and of lockdown, such as bereavement, social isolation, job loss and feelings of uncertainty or loss of control. If these effects last for more than a couple of weeks or appear to impair patients' ability to function as normal, nurses should consider screening for psychological disorder and/or referral for specialist mental health support, via the GP or IAPT services. Although such symptoms may not be severe enough to require referral, they may negatively affect a person's wellbeing and there is risk of continuing symptoms developing into a disorder. Nurses are well-placed to provide psychoeducation around making healthy choices (eg eating well, exercising, spending time outdoors, sleep hygiene and limiting alcohol consumption), which benefit mental health (Velten et al, 2018). They can also direct patients to free online self-help, ensuring that they recommend only evidence-based resources. The NHS recommends ‘Five Steps to Wellbeing’ (Aked et al, 2008):
The link to this and other potential sources of support mentioned in this article are shown in Box 1.
However, intervention too soon after a traumatic event (such as experience of critical illness) has been demonstrated to worsen symptoms of PTSD (Rose et al, 2002). Time may be all that is needed to recover well, and nurses are well placed to normalise patients' experiences; but they should be vigilant for symptoms that do not appear to be improving.
Some people are reported to thrive following traumatic events or difficulties; this has been described as ‘post-traumatic growth’. In a study of 394 patients with coronary heart disease, about a third said that having heart disease had improved their life; this was due to making healthier choices, reducing stress and accepting their mortality (Smith et al, 2014).
Conclusion
Up to now, resources have been concentrated on efforts to prevent the spread of and to treat COVID-19 and little is known about the length and course of recovery (Vittori et al, 2020). Current available evidence from studies of SARS-CoV-2, other coronaviruses and the ICU experience suggest that a longer or more difficult recovery may be associated with having a more severe COVID-19 experience. Although most people will have an uncomplicated recovery, a minority may experience long-term physical effects, fatigue or mental health difficulties. It is not possible to predict who will be affected; however, those requiring hospitalisation, and/or with pre-existing physical comorbidities or mental health problems may be particularly at risk. Nurses should assess and monitor all patients for potential difficulties and can provide self-management support, psychoeducation and referral to appropriate multidisciplinary professionals to assist recovery and limit long term effects.