Canobbio coordinates the UCLA Transitional Care Program for Adolescents and Young Adults with Congenital Heart Disease.
What is the focus of UCLA's transitional care program for adolescents and young adults with congenital heart disease?
The program prepares teens, young adults and their parents to move from child-focused to adult-based healthcare. The services we provide include clinical assessment of self-management skills, the development of an individualized transitional plan of care, and patient and parent education sessions and counseling. We also have non-cardiac services such as adolescent gyneco-logic services and pre-conception counseling.
Our goal is to develop a multidisciplinary program that can provide a wide range of services - including psychological counseling, vocational and career counseling and financial guidance - to any adolescent or young adult with congenital heart disease, whether a patient at our clinic or not.
Why an adult program for congenital heart disease?
Up until the mid 1970s, most children with complex congenital heart disease did not survive into adulthood. That changed with the development of new surgical procedures and treatments to repair dysfunctional hearts. Today, there are more adults than children with congenital heart disease and organizations like the American Heart Association and the American College of Cardiology recognize that they need to train physicians to manage this population because the numbers are growing.
Does the transitional program have a role for the patients' parents?
Absolutely. Initially, we do a lot with the parents. If we're successful, we would hope that over time, the parents begin to withdraw and allow their adolescent and young-adult children to take more responsibility for their own care. That way, as these children become adults, they will know how to navigate the system to manage their own healthcare. We want to help these adolescents develop a skill set that allows them to do that.
What are some of the issues faced by young people with congenital heart disease?
Young people with congenital heart disease have to choose careers that match their abilities and limitations and need to make sure they don't lose their health insurance when they become adults. While there are many other challenges, I think reproduction is one of biggest issues facing young women with congenital heart disease.
Up until the '90s, the literature said that women with complex heart disease should not get pregnant because their condition would worsen. Many of them were advised to have their tubes tied. But as cardiac surgical techniques were refined, more women got their hearts repaired, survived into adulthood and naturally wanted to get pregnant. I became interested in the area and have developed a research program focusing on the reproductive outcomes of females with complex heart disease. A recent study showed that women with complex heart disease who are clinically stable at the time of conception tend to do well throughout their pregnancies.
What do you most enjoy about your work?
The fact that this is a new field in cardiology is exciting and to think I've contributed to some of the knowledge that has emerged is most rewarding. I also enjoy helping women meet the desire to become a mother. Being able to reassure women that they can get through pregnancy safely and enjoy their pregnancy is so gratifying to me.
What are your hobbies or outside interests?
The most important things to me are my husband and my family. My husband and I have three Labrador retrievers and enjoy hiking and exploring with them. I'm also an Anglophile. I love English literature and Jane Austen and try to go to the English countryside once a year. I have family there so that makes it easy. One day I want to take a course at Oxford.