Telehealth in the era of COVID-19 for CGD patients

COVID-19 has had a significant impact on the delivery of healthcare in the United States, particularly for those in the chronic granulomatous disease (CGD) community. Telemedicine was already a growing trend before the pandemic hit but with the ongoing health crisis, it has propelled these virtual services into the forefront. Many in the CGD community are turning to telehealth for care coordination and management of their condition without risking exposure to the virus. This is especially important for patients who still need access to chronic disease management.

Shane Brisson is one of those CGD patients who has recently begun utilizing telehealth options. Shane was initially diagnosed with Limited Wegener Granulomatosis at age 12 and began a regimen of oral Cytoxan that was paired with prednisone. Between the ages of 16 and 25, there were relatively few incidents. A persistent high fever at age 25 sent him to the emergency room where he had a fortuitous encounter with Dr. Robert Alan Good, often considered a founder of modern immunology. “Dr. Good was able to connect the dots and provide me with the correct diagnosis of CGD,” says Shane. After Dr. Good’s passing in 2003, Shane eventually crossed paths with Dr. Jennifer Leiding, an immunologist at Johns Hopkins All Children's Hospital in St. Petersburg, Florida.

Shane had a previously scheduled appointment with Dr. Leiding early in the pandemic. She suggested switching the appointment to a virtual meeting. Although new to telemedicine, Shane agreed. During the visit, he provided Dr. Leiding with his vitals and explained his self-quarantine measures. Dr. Leiding was able to make some additional suggestions, such as his wife washing and changing clothes immediately after returning home. They discussed the risk factors associated with different lifestyle choices during this time and settled on a safe path forward. “This was my first telehealth experience,” explains Shane. “It was very comforting to have this opportunity from the safety of my own home.”

Shane has also utilized telehealth tools for acupuncture appointments. For the past several years, Shane has been seeing an acupuncturist to treat gut issues and stress associated with CGD. “Most people have heard of the acupuncture by now, but do not realize the scope of the practice that encompasses Chinese medicine,” explains Shane. “Acupuncture is much more than just needles.” Many practitioners ask questions about digestion, appetite, diet, stress, and sleep and make lifestyle suggestions based on those answers. “In Chinese medicine, there is an emphasis on breath and diet; my acupuncturist makes recommendations tailored to my specific constitution.” Shane has resumed in-person appointments, one of just a few outside engagements.

Growing technology holds much promise for the future of telemedicine for CGD patients. Telehealth can be used for monitoring remotely, facilitating timely care, supporting continuity of care, maintaining patient portals/records and increasing access to providers-particularly for underserved communities. “For the CGD community, I can see where online doctor visits can be especially helpful for patients who live far away from specialists at major medical centers,” concludes Shane.