Children born with congenital heart disease are thriving thanks to advances in diagnosis and treatment. Currently, 85 to 90 percent of these patients survive into adulthood. That’s great news. Unfortunately, studies have shown that as many as 50 to 75 percent of these patients fail to follow up with their care as they become adults and are then more likely to be admitted to the emergency room with urgent problems.
We studied 165 patients from 13- to 25-years-old to assess their readiness to transition to adult care. Patients completed a Transition Readiness Assessment and Pediatric Quality of Life Inventory using an e-tablet. For patients under age 18, we also had a parent complete a Transition Readiness Assessment that helps us better understand the parent’s perceptions of the child’s transition knowledge and behavior.
The study found that patients lack knowledge about:
- Their diagnosis/surgery
- What symptoms to look for that require medical attention
- Pregnancy risks, if any, and safe birth control methods
- Their need for lifelong care
- How to secure health insurance
We are currently conducting a one-year follow-up with our study participants. As a result of participating in the study, 66 percent of the patients requested information we hope will help them improve their readiness. We believe that assessing a patient’s transition readiness and knowledge will allow us to target education and counseling to prepare each patient for the transition to adulthood. With increased knowledge and self-management skills, we hope to promote a successful transition to adulthood to maximize their physical health and quality of life outcomes.
Take the next steps:
- Learn more about the Congenital Heart Center at C.S. Mott Children’s Hospital.
- Learn more about the University of Michigan Adult Congenital Heart Program.
- Watch a video from our Kids4Kids series in which adolescents and teens talk about learning to take an active role in their healthcare.
Karen Christine Uzark, PhD, NP is a Certified Pediatric Nurse Practitioner. She is a graduate of the University of Michigan School of Public Health and is an associate professor of pediatrics and cardiac surgery and the assistant director of M-CHORD, the Michigan Congenital Heart Outcomes Research and Discovery program.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.