Adults with congenital heart disease have one thing in common: loss to follow up. Across the world, children born with congenital heart diagnoses often stop engaging with the medical system when they graduate from high school. A lack of understanding of the need for lifelong care, no longer having parents insist on appointments, a fear of learning that something new is wrong, and just the business of life: education, work, family are all touted as potential drivers of this precipitous drop-off in cardiac care (https://professional.heart.org/professional/ScienceNews/UCM_464716_Children-with-Congenital-Heart-Disease-Are-Not-Getting-the-Follow-Up-They-Need.jsp).
It is challenging to combat these factors successfully. However, like all consumers, there are mechanisms to re-engage adults with congenital heart disease in cardiac care: convenience and connection. Once I recognized that, the answer was right in front of me: Telemedicine is how I started to bring them back.
Convenience
When I began practicing cardiology about a decade ago, I thought I would bond with my patients and they would stay with me forever. Many have, but a select few started to no-show or cancel appointments at the last minute. Usually, there was an exam coming up, things were busy at the office, or someone had to pick up the kids. The average age of my patient population was 32 years, unlike many of my other cardiology colleagues who had many retirees, so my no-show rates were at the top of our practice’s list. Patients who lived far from Boston started to ask when I would come out near them. We had started a few community and rural clinics, but I knew I could not travel the state, much less New England that often, with my own ties to Boston.
Tele-stroke had begun a few years earlier at Massachusetts General Hospital (MGH) and I watched its success. I tentatively adopted telemedicine as well, to see if I could space out follow-up visits. It worked. Skipping one year of a drive to Boston was enough to get my patients to show up in person the next year. I began to introduce patients to telemedicine at our very first in-person meeting. If they were unsure about it, we might do a test visit within two weeks to establish both our rapport and the ease of the tele-visit. With the new system, my no-show rates for new patients returning for their subsequent visits have declined. Patients enjoy the convenience of “seeing” me from home and I can engage with them more frequently if needed.
Connection
The “connection” was an element of telemedicine that neither my patients nor I expected. By avoiding the stress of the commute to the city, the ease of having family present, and the cost savings attached to travel, my patients are more relaxed and more rapidly and easily engaged in medical conversation. (http://www.cardiovascularbusiness.com/topics/healthcare-economics/telemedicine-program-saves-time-money-managing-type-1-diabetes)
Importantly, medical visits often involve making important health-related decisions. When in an anxious or stressed state, patients may make cognitive errors and physicians may not recognize that their communication is unsuccessful. (https://www.forbes.com/sites/quora/2017/08/04/even-doctors-use-daniel-kahnemans-thinking-fast-and-slow-for-solving-big-problems/#a87fe8330846). Some of my most “successful” conversations about the need for surgery have actually occurred over tele-visits. Take the hustle of the clinic experience away and leave the physician and the patient in comfortable surroundings without distraction, and perhaps we favor a slow, deliberative mindset and better communication.
As we continue to find uses for telemedicine, it is exciting to recognize that its use is not limited to rural areas and home-bound populations, nor is it exclusively for urgent care. In the adult congenital heart population, telemedicine brought our children back to care as adults. In the context of longitudinal care, virtual visits may be the key to enhancing patient engagement.
