Single ventricle congenital heart defects are rare disorders in children affecting one lower chamber of the heart. Children born with one of these defects are among the most complex congenital heart problems, facing multiple surgeries and ongoing care throughout their lifetime. Researchers at the Texas Center for Pediatric and Congenital Heart Disease, in collaboration with partners at the Dell Medical School, want to identify the unmet needs of people diagnosed with one of these defects. The goal is to design and provide the most meaningful and compassionate care for these patients. UT Health Austin congenital heart surgeon Carlos M. Mery, MD, MPH, leads the study and is here to tell us more.
What exactly are single ventricle heart defects and what do patients with these defects face over their lifetime?
Single-ventricle heart defects are a type of congenital heart disease in which babies are born with only one functional lower chamber of the heart, instead of the normal two. It’s a serious disease that we cannot really cure, but with a series of open heart surgeries, we’re able to create a circulation compatible with life. Patients and families face a lifetime of challenges including multiple surgical procedures, cardiac catheterizations, hospital admissions, and close monitoring at home. A good number of these patients end up living in the hospital for the first 6 months of their lives, with all the challenges that come with that.
What does the study hope to accomplish?
The entire care paradigm for this disease has been created based on what we as clinicians perceive are the needs of our patients. The purpose of this study is to change this around and to listen to the true experts in the field: the patients and their families that have to live with the disease. Using different research techniques, we want to gain a deep understanding of what it means to live with the disease – the daily challenges, the pain points, the unmet needs. We want to also understand what matters most to our patients. These insights will then allow us to develop a map of their lifetime journey and identify opportunities throughout that journey so we can redesign the way that we, as a field, provide care for these children and their families.
How will your collaborators at Dell Medical School help design care for these patients?
This project is a collaboration between 3 entities at The University of Texas at Austin: our program, the Texas Center for Pediatric and Congenital Heart Disease, a clinical partnership between UT Health Austin and Dell Children’s Medical Center, the Value Institute for Health and Care at Dell Medical School and McCombs School of Business, and the Design Institute for Health at Dell Medical School and the College of Fine Arts. Our collaborators at the Value Institute will conduct a series of experience groups with patients and families to start gaining insight into their needs and challenges. Staff from the Design Institute will then dig deeper by conducting 1:1 interviews with patients and families at their homes. We will then have a series of workshops to bring everything together and start looking at opportunities to redesign care. Collectively, our team aspires to create a journey for patients and families with single-ventricle congenital heart disease that is anchored on the principles of human-centered design, value-based care, and health equity.
If someone is interested in participating in the study, who should they call?
Patients and families with single-ventricle congenital heart disease can either call 512-495-5858 or email CardiacResearch@austin.utexas.edu for more information.