Using the Virtual New Normal to Care for Sickle Cell Disease Patients
Over the last several months, the COVID-19 pandemic has prompted a shift in the way many providers care for their patients. At Boston Medical Center, the need to adapt in order to address the growing health concerns among vulnerable populations sparked an uptick in the use of the telehealth model—utilizing video and phone communications to assess and respond to the needs of patients. The sickle cell disease (SCD) community quickly became identified as a group who would greatly benefit from using telehealth as a way to prevent a lapse in care that could be detrimental to their health.
“We were concerned that patients living with sickle cell disease were going to be a high-risk population for both sustaining an infection and developing complications from [COVID-19]. Because of that, we really wanted to limit their direct contact with the hospital,” explains Elizabeth Klings, MD, director of the Center of Excellence in Sickle Cell Disease at Boston Medical Center.
In 2018, the center established a formal multidisciplinary clinic as part of the adult program, which runs twice a month and allows patients to see both primary care and specialty providers in one visit. It also affords clinicians a common, collaborative space to discuss patients’ individual care plans. Early in the pandemic, Klings and her teammates recognized this model needed to be immediately replicated in the new virtual world, so they replaced in-person group meetings with Zoom check-ins.
“We found that [continuing to have a space to discuss patient care plans as a team] was a critical piece to providing comprehensive wraparound care during the pandemic, as many of us were calling patients from different locations,” Klings explains.
As COVID-19 continued to impact Greater Boston, a large number of appointments both within pediatrics and adult care, transitioned to telehealth visits. Patients’ response to the change was overwhelmingly positive. Klings also realized no-show rates dropped significantly:
“[With telehealth], we were able to eliminate some of the issues that our patients face with getting to the hospital, including transportation and the time commitments needed to actually travel to a visit, particularly if they live a significant distance from Boston Medical Center.”
Taking remote care one step further, the center also implemented a mobile phlebotomy service, allowing patients to conduct a majority of their routine laboratory work out of the comfort and safety of their homes. Although some patients still required visiting the hospital for monthly treatments, such as intravenous medications, a significant portion of patients were able to take advantage of this opportunity.
The overall success of the telehealth program proved it should be permanently embedded in the SCD care paradigm, not just during a pandemic, because it can benefit patients for a variety of reasons. According to the National Institutes of Health, SCD is the most common inherited blood disorder in the United States. Yet, despite affecting approximately 100,000 Americans, it has long been associated with disparities in access to specialized treatment. Telehealth serves as a potential tool to improve care for those with SCD beyond the typical geographical region covered by Boston Medical Center, in rural care deserts and on a national scale.
“We’ve started to explore areas where we can extend care to SCD patients through the telehealth model, such as New Hampshire, Vermont and Maine. These particular regions lack the number of physicians who possess the expertise in managing this disease, particularly on the adult side,” says Klings. “Furthermore, we know that this is an area of intense need and so there has been a lot of interest in developing technology to really improve the fragmentation of care, predominantly on the outpatient side.”
Telementoring has also steadily increased to promote educational needs across specialties, including SCD. Using telementoring generates a forum-based space within major academic medical centers to safely discuss and provide guidance on clinical cases. “It’s basically a way of creating a partnership between centers of excellence in sickle cell disease and community-based physicians,” says Klings. Launched from the urgent need to increase education around sickle cell disease in relation to COVID-19, Klings has met colleagues across the country virtually every week since March to offer her expertise.
As the pandemic continues to evolve, the question remains how telehealth will evolve with it. Pediatric providers have found particular success with video visits and are continuing to utilize them in a larger capacity. Klings recognizes however that for many adult SCD patients, it’s all about striking the right balance: “We are currently doing a hybrid approach and continuing to determine how to best intersperse [telehealth] visits moving forward.”
While she understands some of the center’s more medically complex patients will still require in-person visits, Klings believes telehealth will remain an important tool in caring for a majority of SCD patients. “Overall, I think we found our patients to be very responsive to this model of care. It has really allowed us to improve our ability to connect with them on a different level,” she concludes.