Caring for patients after COVID-19: a marathon, not a sprint

Most patients with COVID-19 experience mild disease but of those who are admitted to hospital with more severe illness, half are discharged alive – and are likely to need ongoing care and support in the community

Most patients with COVID-19 do not need hospital admission, and of those who have more severe disease, many are only in hospital for an average of 7 days. However, a high proportion of patients admitted to hospital need to be treated in an intensive care unit.¹

According to new research into almost 17,000 hospitalised patients in the UK, although 45% of patients admitted to ICU have died, and a further 24% were receiving ongoing hospital care at the time of reporting, 31% have been discharged. The figures are slightly less favourable for patients who needed mechanical ventilation.¹

Nonetheless, a picture is emerging of a substantial body of patients who have been very ill, but who are now back at home. Unfortunately, this does not mean that they are fully recovered: a number of physical and psychological problems are expected to persist for several months post-discharge, and some patients are unlikely to ever be as well as before they acquired the infection.

COVID-19 is a new disease, and more information is coming out all the time. A lot of what we know about SARS-CoV-2, the coronavirus that causes COVID-19, is extrapolated from experience of previous coronavirus outbreaks – SARS (Severe Acute Respiratory Syndrome) in 2003, MERS (Middle Eastern Respiratory Syndrome), first reported in Saudi Arabia in 2012 – together with a rapidly published body of literature following the start of the pandemic in Wuhan, China, at the end of 2019. Experience of patients with acute respiratory distress syndrome (ARDS) has also informed advice from an Ad-hoc International Task Force on Early Rehabilitation.

CLINICAL CHARACTERISTICS

The main signs and symptoms of patients hospitalised with COVID-19 are fever, cough, dyspnoea, myalgia or fatigue, high respiratory rate (>24 breaths per minute [bpm]) and sputum production. The most common reasons for admission to ICU are hypoxemic respiratory failure requiring mechanical ventilation, hypotension requiring vasopressor treatment, or both.² Most ICU patients developed multi-organ failure, including ARDS (67%), acute kidney injury (29%), cardiac injury (23%), and liver dysfunction (29%).³ Common pre-existing comorbidities include renal dysfunction, hypertension, diabetes, coronary heart disease and obesity.

Up to 80% of hospitalised COVID-19 patients have prolonged inpatient stays (≥21 days).⁴

For patients with ARDS, prolonged stay in ICU is known to have a significant impact on lung function and physical functioning, including loss of muscle mass and function, neuropathy and/or myopathy (ICU-acquired muscle weakness), and on emotional well being.⁵

COVID-19 patients may still have the virus after symptoms disappear, and may remain contagious for several weeks after being infected. Viral shedding may persist for between 20 days and 5 weeks, according to one of the early Wuhan studies.⁶

Physical function recovery after ARDS is variable, with some patients making rapid improvement to high physical function by 2 months, but others showing little or no improvement by 6 months.⁷

In addition, common psychological symptoms reported 12 months later by ICU survivors, including patients with ARDS, include anxiety (34%), depression (33%) and post-traumatic stress disorder (PTSD, 19%).⁸ About a third of family members of ARDS survivors also develop PTSD.⁹

Under normal circumstances, patients would be assessed prior to discharge, including accessibility of the patient’s home, stair climbing, swallowing and cognitive function.⁵ With the pressure on the acute sector to discharge all patients who do not actively need to be in a hospital bed, discharge is being expedited and not all assessments will have taken place before the patient is sent home.¹⁰

NHS chief executive Sir Simon Stevens has warned: ‘We are going to see increased demand for COVID-19 aftercare and support in community health services, primary care, and mental health…for patients who have recovered from COVID and who, having been discharged from hospital, need ongoing health support. General practice will need to continue to stratify and proactively contact their high-risk patients with ongoing care needs, including those in the shielding cohort, to ensure they are accessing needed care and are receiving their medications.’¹¹

WHAT MIGHT COVID-19 SURVIVORS NEED?

COVID-19 patients who have been discharged into the community may continue to have a variety of physical and psychological sequelae with which they will need ongoing support.⁵

Long term consequences of COVID-19 may include fatigue, persistent changes in heart and lung function, depression, anxiety and PTSD. Some patients may experience significant cognitive impairment, which in extreme cases could include dementia-like presentations. Even patients with milder illness may experience psychological difficulties.¹²

Physical problems

• Dyspnoea
• Fatigue
• Pain
• Need for supplemental oxygen
• Inadequate nutrition

In an article for the Primary Care Respiratory Society, PCRS Education lead and GP Dr Steve Holmes and consultant respiratory physician Dr Rob Stone suggest that, in the absence of specific studies, recovery from COVID-19 is likely to correspond to previous coronavirus respiratory infections (SARS, MERS), influenza and community acquired pneumonia.¹³

Muscle aches, chest pain and sputum production (less pronounced in COVID-19) should be substantially reduced by 4 weeks;6 cough and dyspnoea should have improved by 6 weeks; most symptoms should have resolved within 3 months, but fatigue may persist; and by 6 months, symptoms should have fully resolved except in patients with a complicated intensive care stay, in which case mobility and/or respiratory problems may be prolonged.¹³ Some patients will suffer from post viral chronic fatigue syndrome, which was also observed in the previous SARS coronavirus outbreak.

Added complications during the COVID-19 patient’s hospital stay may include:

• Sepsis
• Respiratory failure
• Heart failure
• Coagulopathy
• Myocardial infarction
• Secondary infection
• Deep vein thrombosis or pulmonary embolus.

These conditions will need to be managed in their own right.¹³

An Ad-hoc International Task Force on Early Rehabilitation recommends that routine follow-up of patients should be considered once they are no longer contagious (which may be 6-8 weeks after discharge). This should include assessment of lung function, exercise and functional capacity, muscle function, balance, symptoms and health-related quality of life.⁵

During the first few weeks after discharge, patients – who are assumed to remain infectious – are recommended to do only low-intensity physical activity or exercises, if a formal exercise assessment has not yet taken place. Where possible, use video calling rather than face-to-face contact.⁵

Formal lung function testing is probably not feasible for the time being, and in any event, should not be performed on patients who may still be infectious – so start with relatively simple graded exercises, using no or minimal equipment.⁵ While the benefits of early rehabilitation are currently unclear, outpatient exercise training has been shown to improve physical capacity and ability to exercise compared with ‘usual care’ in patients discharged following critical illness requiring mechanical ventilation.⁵ The regular exercise programmes that are usually used in patients with COPD or asthma can be considered for patients who are no longer infectious. See The British Lung Foundation videos at https://www.blf.org.uk/support-for-you/keep-active/exercise-video.

Loss of weight and muscle mass must be assessed and treated during comprehensive rehabilitation. As the symptoms of COVID-19 include changes to the senses of smell and taste, as well as poor appetite, patients’ ability to eat normally may be affected – and as in any other illness, good nutrition is important for recovery.¹⁴ New dietary leaflets for patients who have had the virus are available at https://www.malnutritionpathway.co.uk/covid19.

Nutrition Nurse Specialist Liz Anderson said: ‘Those leaving hospital may require additional dietary support in order to regain lost muscle mass. These leaflets offer practice nutritional advice for people who have been affected by the illness.’

See also Recognising and managing malnutrition in COPD, Practice Nurse 2020;50(3):16-19

Psychological problems

Common psychological issues during recovery include:

• Anxiety
• Low mood
• Fear of further illness and hypervigilance to bodily symptoms
• Nightmares or flashbacks
• Poor sleep
• Impaired memory functioning
• Effects on attention, mental processing speed and executive function
• Fear of stigma or of contaminating others.¹²

Risk factors for subsequent psychological difficulties include prolonged mechanical ventilation and prolonged use and high doses of sedatives including benzodiazepines, and inability to communicate due to being intubated.¹²

All patients recovering from severe COVID-19 should be proactively followed up (in person or by phone/video call) between one and two months post-discharge by their GP team, in order to review their psychological, functional and physical needs. Relatives may also be experiencing psychological difficulties, so if the opportunity arises, ask them how they are coping. See Caring for carers, Practice Nurse April 2020;50(4):24-28. Patients with significant difficulties should be referred to a specialised rehabilitation unit for structured, multidisciplinary rehabilitation.¹²

INFECTION CONTROL

If you need to provide face-to-face treatment of COVID-19 patients following hospital discharge, make sure that it is safe for both you and the patient. Remember that patients may still be infectious for several weeks after the initial infection. Use personal protection equipment – the minimum requirements for basic protection are disposable aprons and gloves, and fluid resistant face masks. Eye protection should be worn when there is a risk of contamination from splashing of secretions (including respiratory secretions), bodily fluids or excretions. An individual risk assessment should be carried out before providing care.¹⁵

REFERENCES

1. Docherty AB, Harrison EM, Green CA, et al. Features of 16,749 hospitalised UK patients with COVID-19 using ISARIC WHO Clinical Characterisation Protocol; 28 April 2020. Preprint doi: https://doi.org/10.1101/2020.04.23.20076042

2. Bhatraju PK, Ghassemieh BJ, Nichols M, et al. COVID-19 in critically ill patients in the Seattle region – Case series. N Engl J Med 30 Mar 2020; doi:10.1056/NEJMoa2004500

3. Yang X, Yuan Y, Shu H, et al. Clinical course and outcomes of critically ill patients with SARS-CoV-2 pneumonia in Wuhan, China: A single-centered, retrospective, observational study. Lancet Resp Med 24 February 2020; doi:10.1016/S2213-2600(2)30079-5

4. Wang L, He W, Yu X, et al. Coronavirus disease 2019 in elderly patients: characteristics and prognostic factors based on 4-week follow-up. J Infect 30 March;S0163-4453(20)30146-8. Doi:10.1016/jinf.2020.03.019

5. Spruit MA, Holland Ae, Singh S, et al. Report of an ad-hoc international task force to develop an expert-based opinion on early and short-term rehabilitation interventions (after the acute hospital setting) in COVIVD-19 survivors; 3 April 2020. https://ers.app.box.com/s/npzkvigtl4w3pb0vbsth4y0fxe7ae9z9

6. Zhou F, Yu T, Du R, et al. Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan, China: a retrospective cohort study. Lancet 2020;395(10229):1054-62

7. Gandotra S, Lovato J, Case D, et al. Physical function trajectories in survivors of acute respiratory failure. Ann Am Thorac Soc 2019;16(4):471-477

8. Dijkstra-Kersten S, Kok L, Kerckchoffs M, et al. Neuropsychiatric outcome in subgroups of intensive care unit survivors: implications for after-care. J Crit Care 2020;55:171-176

9. Lee RY, Engelberg RA, Curtis JR, et al. Novel risk factors for post-traumatic stress disorder symptoms in family members of acute respiratory distress syndrome survivors. Crit Care Med 2019;47(7):934-941

10. NHS England. COVID-19 Hospital discharge service requirements; 19 March 2020. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/880288/COVID-19_hospital_discharge_service_requirements.pdf

11. NHS England. Second phase of NHS response to COVID-19; 29 April 2020.

12. The British Psychological Society. Meeting the psychological needs of people recovering from severe coronavirus (COVID-19); 16 April 2020.

13. Holmes S, Stone R. Recovering after COVID-19 – a practical guide for clinicians and commissioners. Primary Care Respiratory Society; 30 April 2020. https://www.pcrs-uk.org/sites/pcrs-uk.org/files/RecoveryPostCovid19_FINAL_0.pdf

14. Managing Adult Malnutrition. COVID-19 & good nutrition. https://www.malnutritionpathway.co.uk/covid19

15. RCGP guidance. COVID-19 – GP guide to personal protective equipment; 20 March 2020. https://www.rcgp.org.uk/about-us/rcgp-blog/covid-19-gp-guide-personal-protective-equipment.aspx