Op-Ed: COVID-19 ‘long-haulers’ need access to better care

Rutgers neurology clinic to help patients suffering with long-term COVID-19 complications
Dr. Nizar Souayah

At the beginning of the pandemic, neurological complications in COVID-19 patients were not widely reported; however, over time, additional research has shown that up to 84% of COVID-19 patients have neurological symptoms either when they fall ill, or that develop later as a complication during the course of disease.

Today, reports of COVID-19 “long-haulers,” or those who continue to experience debilitating symptoms long after diagnosis, dominate news reports, with many survivors reporting neurological symptoms such as “brain fog.”

The neurological complications of COVID-19 include, but are not limited to, headache, cognitive impairment, neuropathic pain, stroke, seizure disorders, loss of smell and taste, certain inflammatory neuropathies, and muscle disease.

Since elderly patients with chronic medical conditions are at an increased risk of experiencing an altered mental state when they are acutely ill, many often experience this symptom when they contract COVID-19. Neurological manifestations in the elderly have been associated with a poor prognosis including death, intensive care admission, prolonged hospitalization, and discharge to hospice or skilled nursing facilities. This is especially problematic because we know that elderly patients who contract COVID-19, especially those with underlying medical conditions such as chronic bronchitis, emphysema, heart failure or diabetes, are already more likely to have a poor prognosis.

People of color are bearing the burden

Members of the Black community and, to a lesser extent, the Latinx community bear a disproportionate burden of adverse outcomes to COVID-19. Black Americans also have a disproportionate burden of underlying comorbidities. When adding the underlying health risk factors of diabetes, hypertension, obesity and asthma, the Black community is at the epicenter of the COVID-19 health crisis.

COVID-19 patients frequently leave the hospital with pulmonary and neurological complications in addition to other non-neurological conditions. After more than a year of waging war on the front lines, we now know that neurological manifestations of COVID-19 are common and carry a serious prognosis, and that minorities, the elderly, and patients with comorbid conditions carry a disproportionate disease morbidity and mortality.

As a doctor working in the epicenter of this pandemic, I believe a multidisciplinary health care center is essential for securing adequate follow-up of these patients. The optimization of their post-hospitalization care requires a specialized and interactive structure. Their journey to a full recovery doesn’t end at discharge. Many patients still require ongoing care.

Since the start of the pandemic, Rutgers-affiliated hospitals have treated thousands of COVID-19 patients, emphasizing the need for a specialized clinic to manage their care in an outpatient setting.

To respond to this unmet need, our team at Rutgers New Jersey Medical School (NJMS) in Newark established the Comprehensive COVID-19 Neurology Care Center of Excellence to help patients with various neurological manifestations of COVID-19.

First such clinic in tri-state area

Our care center is the first neurology clinic in the tri-state area to offer an outpatient multidisciplinary approach to treating neurological complications of COVID-19. We work in collaboration with the NJMS departments of medicine, ENT, physical medicine and rehabilitation, psychiatry, and the Pain Management Center; as well as University Hospital and other Rutgers-affiliated hospitals.

In addition to providing better care for patients who are continuing to cope with COVID-19 neurological complications, we also want to do more to study why these complications occur in the first place.

While there is a wealth of research demonstrating the risk disparities in COVID-19 overall, less is known about the risk disparities in neurological manifestations of the virus. The correlation between neurological complications and other clinical manifestations is also unknown.

Furthermore, the prognosis of neurological complications has not been thoroughly investigated. More specifically, the short- and long-term prognosis in Black Americans, other minorities, the elderly, and patients with comorbid conditions was not studied in any large studies and long-term follow-ups.

At New Jersey Medical School, we are currently conducting research to characterize disease progression, and outcomes of COVID-19 infections with and without neurological complications. We are also working on developing predictive models for disease outcomes.

Neurological research gaps

Our goal is to close the current gaps in the research by studying the correlation between neurological and non-neurological complications of COVID-19, as well as the long-term complications and outcomes of neurological complications.

There is no doubt that there are survivors in our community who are suffering from long-term effects of COVID-19, and they need help now. It’s clear that patients who continue to experience neurological complications benefit from consistent follow-ups and team-based care.

In addition to easing access to tests and evaluations, such as those for physical therapy and cognitive function, establishing a dedicated center enables a team-based approach between the COVID-19 Neurology Care Center and other departments at our medical schools.

Together with the patient, their family and other physicians, we can create both short- and long-term goals for recovery and work to meet our patients’ daily needs. It is my hope that by establishing this center, we are finally on the path to giving COVID-19 long-haulers with neurological complications the relief they deserve.