By Christopher Cheney
Saint Barnabas Medical Center and RWJBarnabas Health Medical Group have created a multidisciplinary and comprehensive program to care for coronavirus “long haulers.”
Many COVID-19 patients have experienced a range of symptoms for weeks or months after the acute phase of their illness has passed. The National Institutes of Health calls the long-hauler condition post-acute sequelae of COVID-19 (PASC).
In October, Saint Barnabas Medical Center in Livingston, New Jersey, and West Orange, New Jersey-based RWJBarnabas Health Medical Group launched the Post-COVID Comprehensive Assessment, Recovery and Evaluation (CARE) program to care for PASC patients. Over the past seven months, the Post-COVID CARE program has treated more than 120 patients.
The Post-COVID CARE program tailors treatment for each patient, says Vanessa Trespalacios, MD, medical director of the program and an RWJBarnabas Health Medical Group internal medicine physician.
“COVID-19 and PASC can affect any organ system. Our approach is a comprehensive and multidisciplinary approach. We feel that kind of approach is necessary because each patient experience is different, with varying degrees of impact on their health as well as on their quality of life. Some patients are extremely impaired, while others have milder symptoms that are cumbersome. The extent of their symptoms and their test results dictates referrals, testing, and the formulation of their entire treatment plan,” she says.
The Post-COVID CARE program features physicians and services from 17 specialties, including behavioral health, cardiology, dentistry, dermatology, infectious diseases, pulmonology, neurology, radiology, and respiratory therapy.
“We are taking the patients as a whole and every patient has a different set of symptoms that need to be addressed by different subspecialists. That is what sets us apart because most of the programs that have been established are either focused and led by pulmonary practices or are rehab programs such as physical therapy. When you have a patient who has chest pains, physical therapy does not have a role there. When you have patients who have cognitive decline—which is often called brain fog—physical therapy and pulmonary do not have a role there,” Trespalacios says.
Role of nurse navigators
A pair of nurse navigators are pivotal team members in the Post-COVID CARE program, Trespalacios says.
“The nurse navigator is the patient’s first point of contact with the program once their appointment has been scheduled. The nurse navigator collects a thorough history of the patient’s disease course, post-acute symptoms, and any prior testing and treatments that the patient has had. Once a patient has had a consultation with a clinician and a treatment plan has been developed, the nurse navigator then facilitates appointments for any testing as well as any referrals to subspecialists, physical therapy, or any other treatment that we feel is necessary,” she says.
Communication is an essential element of the nurse navigator position, Trespalacios says. “The nurse navigator maintains open communication with the patients about their progress in between follow-up appointments. The nurse navigator communicates with patients about their test results, makes sure patients understand their treatment plans and why they are having tests and referrals, and helps in the collection of data for research.”
The importance of research cannot be underestimated, she says. “We are going to be coming into a global healthcare crisis unless we can collect data on PASC and develop treatments for PASC symptoms. In addition to seeing patients, we are collecting data and doing research, so that we can have better information to better serve our patients and find some answers.”
Keys to recovery
For PASC patients, Trespalacios says there at two keys to recovery: patience and follow-up care.
“Patience is very important not only because we are all still learning about this disease but also because it appears that in PASC recovery is very slow, which is different from other viral illnesses. The rehabilitation journey must be slow, steady, and sustained for patients to achieve any progress. Otherwise, many patients experience some regression or even a temporary exacerbation or worsening of their symptoms,” she says.
“We have also learned that another key to the recovery process is frequent follow-up because these symptoms evolve. Some patients have some symptoms that are present initially that either resolve or change over time. Some patients develop new symptoms as time goes on. So, you must take a fluid approach to treatment. We have frequent follow-up with these patients to assess their symptoms and to change the course of treatment if necessary,” she says.
Christopher Cheney is the senior clinical care editor at HealthLeaders.