Kelly DiMaggio – My Interview with a CHD Researcher
The American Heart Association (AHA) and The Children's Heart Foundation (CHF) joined together to co-fund a research program specifically for congenital heart defect (CHD) research and just recently announced the third round of recipients for this year’s CHD Research Awards. As a 28-year-old woman living with hypoplastic left heart syndrome (HLHS), a complex congenital heart defect, I could not be more thrilled to hear about this collaboration!
I had the honor of speaking with one of the recipients of this year's research awards, Dr. Anushree Agarwal of UC San Francisco about her background and training, her research project, and her thoughts on ACHD (adult congenital heart disease) care. Dr. Agarwal's interest in medicine dates back to her childhood, when she witnessed her younger brother have a syncopal episode and a resulting cardiac catheterization to open a tight bicuspid aortic valve. Her brother was 9 at the time, and she was 11. There was no one in her family in medicine, but she saw how integral the health care professionals became in her brother’s journey and knew that she wanted to be a doctor. She was driven by the desire to make a difference, and from my conversation with her, it is evident that she is already making a huge difference in the lives of many and will continue to do so! Dr. Agarwal began her cardiac training, and through her mentor became exposed to a variety of adults living with CHD, many of which are considered quite complex. She decided to pursue specializing in adult congenital heart disease for a variety of reasons. She commented that the ACHD field is quite challenging, as every patient is truly unique. Additionally, the ACHD field is still newly emerging and is the area where Dr. Agarwal feels she will be able to contribute the most.
I asked Dr. Agarwal what she thought the biggest roadblock was for physicians when they are presented with an ACHD patient. She replied that as a doctor, she is trained to see a patient, identify the problem, and treat accordingly. This is where it gets tricky, as there are still so many unknowns and complications for the aging CHD patient. There is currently a huge gap in developing a useful structure and process of care for ACHD patients. For the first time, there are now more adults living with CHDs than children. However, providers have no point of reference and frankly no idea what to expect for these patients down the line. I was shocked to learn that there is not a U.S. national registry that tracks this data! This is where her research fits in. Her research will use large existing databases to generate the first U.S. population-based estimates of CHD comorbidities and health care utilization and costs, which then can be used to allocate resources appropriately for ACHD clinics as more children born with CHDs survive into adulthood. I could not be more excited by this, as it speaks to my experiences and my future directly.
The crux of her research will focus on:
- How often do ACHD patients utilize inpatient and outpatient services compared to adults without CHD?
- What adult onset conditions (ex: diabetes, heart attack, stroke, hypertension, etc.) are ACHD patients experiencing? Are they experiencing the onset of these conditions at an earlier age, in greater severity, or more frequently than adults without CHD?
- And finally – how does the cost of care differ for ACHD patients compared to non-ACHD patients?
Extremely preliminary data indicates that ACHD patients twice as likely to use outpatient services and three times as likely to use inpatient services. I am fascinated to see what the data will show in regards to comorbidities ACHD patients face and how they are affected. Even after this portion of the research concludes, the resulting data will pose a fresh set of questions and issues to study.
As Dr. Agarwal explained, “For example, if we find that diabetes is more common, occurs at a younger age and is associated with worse outcomes in ACHD patients compared to general population, then further research to identify the risk factors or other biological explanations for this difference will be sought. This can also help generate individualized preventive and management strategies, taking into account the specific needs of ACHD population.”
As our conversation came to a close, I asked her what she would say to the ACHD patients, particularly those who are not seeking continued care past their childhood surgical repairs. Her response was simple, yet profound. “We have a long way to go, but we’ll get there. Help us to help you. We will constantly strive to figure out the best way to treat you, even if you don’t have insurance or the money or haven’t seen a cardiologist for follow-up care in years."
I’m confident that I can speak on behalf of many in expressing my sincere gratitude to Dr. Agarwal, her colleagues and all other ACHD doctors out there. Being an adult with CHD, especially in the first true generation of survivors, can be quite scary and emotionally draining. But…I have so much hope! I feel much more at ease and much more capable of coping when I think of the doctors like Dr. Agarwal or my very own ACHD cardiologist, Dr. Stacy Fisher, who are passionately fighting to pave the way for future ACHD care.
