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August 26, 2020

After Care of Survivors of COVID-19—Challenges and a Call to Action

Author Affiliations
  • 1Department of Diabetes, Endocrinology, and Metabolism, Queen Elizabeth Hospital, Birmingham, United Kingdom
  • 2Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, United Kingdom
  • 3Department of Respiratory Medicine, Queen Elizabeth Hospital, Birmingham, United Kingdom
  • 4Institute of Clinical Sciences, University of Birmingham, Birmingham, United Kingdom
  • 5Intensive Care Unit, Queen Elizabeth Hospital, Birmingham, United Kingdom
JAMA Health Forum. 2020;1(8):e200994. doi:10.1001/jamahealthforum.2020.0994

On March 11, 2020, the World Health Organization declared coronavirus disease 2019 (COVID-19) a pandemic. As of July 29, 2020, 17 million cases have been reported worldwide, with more than half a million deaths across 215 countries. In the United States, the cumulative COVID-19 hospitalization rate from March 1 to July 18, 2020, was 120.9 per 100 000 people, representing nearly 400 000 hospitalized patients with laboratory-confirmed COVID-19 during this period.1 In the United Kingdom, more than 100 000 patients with COVID-19 required hospital admission from March 1 to June 26, 2020, including 10 000 who required intensive care unit admission.2

For most patients with severe illness requiring hospitalization, COVID-19 has been a frightening and life-changing experience. At the peak of the pandemic, the attention of health care teams was focused on saving lives and protecting health services from being overwhelmed. Those who survived were often discharged without a robust process of follow-up. The prevalence of post–COVID-19 complications is not yet fully known and may only become apparent in the months and years to come. Data from previous coronavirus (severe acute respiratory syndrome coronavirus [SARS-CoV] and Middle East respiratory syndrome coronavirus [MERS-CoV]) outbreaks indicate that between 20% and 40% of survivors experience long-term complications.3,4 In a recent report of 143 patients with COVID-19 who were evaluated a mean of 2 months after hospital discharge at a follow-up clinic in Rome, Italy, many patients reported persistent fatigue (53.1%), dyspnea (43.4%), joint pain (27.3%), and chest pain (21.7%).5

Drawing on these experiences, respiratory, cardiovascular, neurologic, metabolic, and psychosocial complications may be important long-term sequelae of COVID-19. It is therefore essential that systems are in place for timely and thorough identification of such sequelae followed by appropriate interventions. This approach has been advocated by professional organizations such as the British Thoracic Society and the British Society of Rehabilitation Medicine. We discuss the challenges we have addressed in establishing a multidisciplinary COVID-19 follow-up clinic in a secondary care setting at the University Hospital of Birmingham, England.

First, the initial focus in addressing the pandemic was on saving lives and protecting health services as inpatient care was fully supported. However, there was no plan at the outset regarding the potential service needs for the medium-term and long-term care of survivors in the community. These needs posed a challenge in identifying the required organizational structure, resources, and staffing. In early June 2020, the National Health Service in England published guidance on the after-care needs of patients recovering from COVID-19.6 With the help of committed health care professionals and managers, we established a working group that met regularly and mobilized the resources required to launch our multidisciplinary follow-up clinic.

Second, the multisystem nature of severe COVID-19 required a flexible working structure spanning multiple departments and divisions. Three physicians representing intensive care, chest medicine, and general medicine formed the core unit. They then engaged a multidisciplinary team with expertise in infectious disease, cardiology, neurology, geriatrics, immunology, virology, occupational therapy, rehabilitation medicine, physiotherapy, nursing, nutrition, and psychology.

Third, managing the sheer number of patients who need follow-up care is daunting, given that our hospital had 3566 patients with COVID-19 admitted from March 4 through July 27. Therefore, we prioritized patients by defining disease severity criteria and keywords to guide a bioinformatics search and risk stratification. These criteria included hospital admission for more than 3 days, with maximum fraction of inspired oxygen of greater than 40% for more than 6 hours, stroke, pulmonary embolism, deep venous thrombosis, delirium, elevated high-sensitivity troponin levels, residual acute kidney injury, or tachycardia of more than 100 beats per minute at discharge. Discharged patients with COVID-19 who met any of these criteria have had their medical records reviewed and then been contacted by telephone to determine ongoing needs, provide reassurance, and determine whether recovery is progressing as expected. All patients with a clinical frailty scale of 6 or lower7 who met any of the previously described criteria and were discharged to their own home or a rehabilitation unit were offered a remote and/or face-to-face follow-up visit as required. Among our screened patients, 625 met these criteria, 152 have had remote consultations, and 56 have been seen in our multidisciplinary clinic through late July 2020. Any ongoing medical issues or therapies are then managed by appropriate follow-up services.

Fourth, finding physical space in the outpatient area was a challenge, as social distancing in the clinic reduced the capacity by 70%. Furthermore, other related clinical services needed to reduce their backlogs of patents who required face-to-face appointments, which affected the number of follow-up clinic sessions we could offer. Clinic protocols were created to allow full participation across the multidisciplinary team so that integrated and personalized care plans could be developed for each patient.

Our experience highlights the challenges and urgent unmet needs of posthospital care for patients who had severe COVID-19. National and local policy makers, health system managers, and health care professionals should work together to address the emerging long-term consequences for patients recovering from COVID-19. For many of these patients, surviving COVID-19 may only be the beginning of their journey of recovery. Therefore, our care should not end at the hospital door when they are discharged.

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Article Information

Open Access: This is an open access article distributed under the terms of the CC-BY License.

Corresponding Author: Tarekegn Geberhiwot, MD, PhD, Department of Diabetes, Endocrinology, and Metabolism, University Hospital Birmingham NHS Foundation Trust, Birmingham, B15 2TH United Kingdom (tarekegn.hiwot@uhb.nhs.uk).

Conflict of Interest Disclosures: None reported.

US Centers for Disease Control and Prevention. COVIDView. Updated July 25, 2020. Accessed August 6, 2020. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
National Health Service England. COVID-19 slides. Published June 26, 2020. Accessed August 6, 2020. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/896016/2020-06-26_COVID-19_Slides.pdf
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