Toward Comprehensive Care for Long Covid

“Three years into the Covid pandemic, SARS-CoV-2 is still with us. As the virus evolves, it continues to pose a health threat in terms of both acute infections (or reinfections) and postacute sequelae. In regard to the former, there is evidence that several pharmacologic interventions reduce the severity of infections, lessen morbidity, and lower mortality. Prevention programs have also been successful in reducing overall infection rates. These efforts can be traced in part to colossal federal support for work ranging from vaccine development to clinical trials to nationwide educational endeavors. Such impressive support is all the more striking in contrast to the void in patient care for a SARS-CoV-2 postviral syndrome that may affect 10% or more of infected people.

The sequelae of SARS-CoV-2 infection can involve multiple organ systems and are often grouped together as “long Covid” or PASC (postacute sequelae of SARS-CoV-2). But the terms themselves are nebulous, the clinical presentations extremely variable, and the prognosis uncertain. The absence of evidence-based treatments further fuels the frustration of affected patients and their clinicians. Add to these problems our shaky and fragmented health care system, additionally wobbled by the pandemic, and the result is disarray in our approach to this complex and multifaceted disorder.

The extent of the symptom complex of long Covid is unknown, in part because there is no well-accepted definition of the syndrome and because of the relatively poor penetration of care to marginalized populations that have been disproportionately affected by the pandemic. The Centers for Disease Control and Prevention (CDC) defines long Covid as a wide range of new, returning, or ongoing health problems occurring more than 4 weeks after someone becomes infected with SARS-CoV-2. The World Health Organization (WHO) does not fully define long Covid but classifies it by continuation or onset of new symptoms 3 months after the original bout of illness or positive test. [..]

The pathophysiology of long Covid remains elusive, in part because of the multiple possible signs, symptoms, and organ systems involved. A lack of understanding of long Covid inevitably also complicates care. Long Covid clinics have been established to provide multidisciplinary care, although most affected patients are also followed by primary care providers or seen by various specialists, depending on the duration and severity of their dominant symptoms. Educational programs for patients and clinicians are lacking. Referrals to subspecialists such as cardiologists, pulmonologists, and neurologists are common but often lead to more delays, fragmentation of care, and frustration at all levels. Primary care providers feel the brunt of that frustration, both their patients’ and their own at their inability to help beyond deploying simple strategies, such as exercise or nutritional supplementation, that are used as preventive measures for healthy people. [..]

We believe that over and above this research effort [the National Institutes of Health’s Researching COVID to Enhance Recovery (RECOVER)], the country needs additional structures that can provide the capacity for clinicians, patients, caregivers, advocacy groups, employers, and government officials to learn about, adapt, and implement interventions, therapeutics, and other best practices to combat long Covid. [..]

First, it should support people with long Covid by coordinating clinical care and rehabilitation, reducing health care disparities, and addressing ongoing and complex medical and psychosocial needs, with a particular focus on patients who currently receive fragmented care or no care at all. Such support could be provided by means of national long Covid centers of excellence. [..]

Second, we need to define, continuously improve, and implement standards of care and best practices, built on evidence obtained through a coordinated exchange of information. Third, we can leverage innovative methods for disseminating information and providing support in order to educate clinicians, patients, and communities; broaden access to high-quality care; and further reduce disparities. And fourth, we will need to develop and implement workforce training programs for clinicians caring for patients with long Covid. [..]

In addition, such centers could support and leverage, both nationally and throughout their states, greater educational initiatives from the CDC and the WHO for both clinicians and patients. Some examples include continuing education programs, grand rounds, and the Project ECHO (Extension for Community Healthcare Outcomes) model, a scalable and effective way of using electronic media to inform and facilitate changes in health and education for clinicians. These efforts should focus on symptom complexes, potential complications, and management strategies. We need to demystify the disease and empower affected people, involving them actively in their own care and in education and training. We also recommend that insurance providers reexamine criteria for disability claims and urge employers to gain a better understanding of this disorder and its wide-ranging implications. Most important, we need to put people and communities, not diseases, at the center of our health systems and empower them to take charge of their own health rather than be passive recipients of services.

If the prevalence of long Covid is indeed between 5 and 15%, we will continue to face an enormous challenge to our national health and our health care system moving forward. Innovative approaches will be needed to care for patients with long Covid, and these need to be backed by education, research, and support at all levels.”

Full editorial, JZ Nikolich and CJ Rosen, New England Journal of Medicine, 2023.5.9