Let’s face it, not all patients want to travel to see a doctor, regardless of their diagnosis or symptoms.
In adult congenital heart disease (ACHD), it is estimated that more than 40% of patients live more than two hours away from an ACHD center. One of the most important obstacles we face is getting the affected patients in the door to receive care. Some patients never transitioned to adult care after they got “too old” for their pediatric cardiologist, some think they have been “fixed,” some lack insurance, some think seeing a general cardiologist is sufficient, and many lack the knowledge of how important it is to see an ACHD-trained physician.
The reasons patients don’t want to travel to seek medical care also vary, such as not wanting to drive the distance, limited financial resources to pay for travel, the thought of going to a large institution or a city where an ACHD program is located is intimidating, lack of confidence in finding a doctor that knows about ACHD, lack of knowledge of where to find an ACHD doctor, etc.
The combination of the lack of a sufficient number of ACHD programs nationwide, along with the number of patients who do not want or are unable to travel to receive care, results in a large number of ACHD patients not receiving optimal care. This lack of care or suboptimal care can lead to higher mortality and poorer quality of life compared to individuals who receive proper ACHD care.
Satellite clinics are the bridge to get ACHD patients the care they need. A satellite clinic is closer to their home turf. It’s in their comfort zone. It’s less scary. It’s not in a huge medical center with huge buildings all around. Our South Texas Adult Congenital Heart program, with its main location in San Antonio, brings ACHD care closer to affected patients in Corpus Christi and surrounding areas through its satellite clinic located in the region.
When patients walk into our satellite clinic, they’re not always sure what to expect. They are often confused about their own diagnosis, wonder if we understand them fully and often have lingering doubts about why it is essential to see an ACHD-trained cardiologist. Our outreach care team approaches them on their turf, in their comfort zone and provides them the most information about their heart than they have had in years. They are immediately comforted as they realize our expertise and take comfort in the fact that we can help them live healthy lives with better quality of life.
Once we determine patients’ diagnosis and current cardiac status at our satellite clinic, we can then determine their follow-up and whether or not they need a higher level of care for procedures or testing at our larger institution in the city, which many of them often require after years of suboptimal care. While they would have never come for an initial visit to our clinic in the city, now they are more comfortable doing so when needed because they know us and have established rapport with us. We have proven that we are worth the trip and patients know that they will see a familiar face once they arrive.
One of our most memorable patients was one with a history of “some sort of heart surgery” as an infant who lacked ACHD follow-up for almost 30 years. She had been having progressive shortness of breath and bilateral lower extremity edema for more than two years. Her cardiologist ultimately had nothing else to offer her other than medical management for heart failure. On our first visit with her, she was shocked that we could improve her cardiac status significantly by replacing her pulmonic valve that had severe pulmonic regurgitation. It took us a couple of conversations for her to believe that her symptoms would improve drastically once the valve was fixed, and that she would experience a significant improvement in her functional status.
The patients at our satellite clinic are always grateful that we drive to them. They are happy to receive care by doctors and staff who deal with their diagnosis every day. Once we show them they are in good hands, that relationship is solidified. The gap in their healthcare has officially been bridged. They know they can get to us more easily and also get all the care they need, even if means driving a bit out of their comfort zone on occasion. But it all began at the satellite clinic on their home turf.
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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.
The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.