This blog post is published in memory of our friend and colleague, Vanessa Iglesias, RN.
Of every 100 newborns, 1 is born with a congenital heart defect (CHD), and many of these babies have additional healthcare needs after their primary diagnosis. This lifelong condition requires ongoing care, well beyond the services provided by even highly specialized pediatric cardiologists, who see patients born with CHDs through their adolescence and sometimes longer.
As patients reach the age of 16, they begin transitioning to adult medicine and are expected to take more ownership of their care. The CDC has studied this population, and their findings emphasize the importance of transitioning from pediatric to adult medical care with a heart doctor. According to the study, ongoing specialty care helps people with heart defects live as healthy a life as possible.
Children’s hospitals across the nation have invested in programmatic efforts to assist CHD patients, but as their survival rate increases due to advances in surgical and medical management, the number of these patients who live into adulthood is growing. Therefore, there is a corresponding need to invest in robust and comprehensive CHD transition programs.
We identified three actionable initiatives that children’s hospitals should consider to implement a high-quality, low-cost CHD transition program. These initiatives are based on our personal experiences, past project work with clients, and interviews with top-tier children’s hospitals.
1. Build a partnership with a comprehensive adult cardiovascular program.
Care delivery for these patients requires extensive coordination, from detecting CHDs in newborns to managing transitions of care with specialized, board-certified cardiologists during a patient’s later adolescence. The easiest way to manage this is by partnering with an organization that has an established cardiology practice.
Building a successful roadmap for such a partnership starts with establishing a shared governance model. If implemented appropriately, joint operating committees can manage the location of service, competency development, and operational planning to support the transition program. Highly integrated programs provide dual privileges to their providers, with surgical, electrophysiology, imaging, and diagnostic procedures shared between the two organizations. The partnership can also help detect CHDs in newborns or even during prenatal care, as well as assist CHD patients in transitioning from pediatric to adult medicine.
2. Map transition education resources and operations.
CHD transition education is primarily about informing the patient in a manner that allows them to retain and synthesize the information they need to manage their health going forward. While each patient’s needs are different, standardizing and centralizing CHD transition resources can benefit the system overall by reducing variability and tailoring resources as appropriate based on unique patient circumstances.
With in‑office visits and testing, CHD patients already spend an extensive amount of time with their cardiologist for care. A patient often spends two to three hours in a cardiologist’s office for each visit and testing. As a result, many CHD-specialized pediatric cardiologists do not recommend including a 15‑minute appointment at the end of a visit for transition education. Instead, this should be provided in a separate session with the patient, their parents or guardian(s), and a dedicated transition team. Organizations that manage this well standardize the forum (i.e., virtual or in person), the format (i.e., the content and how it is presented), and the team (e.g., centralized RNs dedicated to CHD transitions).
Mapping these resources and operations should be a business planning effort achieved through your partnership’s shared governance model. A certain level of investment will be necessary to provide transition education due to a lack of reimbursement by many payers for this service. However, when this process is conducted effectively, it allows the patient to manage their health while continuing to receive care from the partnership system for ongoing CHD treatment.
3. Develop the right content for education based on your patients.
Transition programs educate patients on how to manage their own care as an adult. This includes providing information on insurance, who to contact in an emergency, and what to know about living with a CHD. This education is not an overnight process, and to be effective, it must meet the specific needs of each particular patient.
Organizations should work with their clinical education teams to develop content that is both informative and interactive. The “gamification” of certain content—making it engaging for the patient—is an important aspect of education that can include hands‑on activities during the transition process.
Successful Transition Management
For organizations that focus on developing comprehensive cardiac care, CHD transitions should be a key service. Many of our clients acknowledge there is a lot of opportunity to improve the way CHD transitions are managed. Focusing on the three initiatives above can elevate your organization’s ability to educate CHD patients and encourage them to participate in their own care.
Note: We would like to thank Mark Schwartz, Director, Cardiac Service Line, Children’s Hospital of Philadelphia, and Emily Rucksdeschel, MD, Attending Physician with the Philadelphia Adult Congenital Heart Center and the Division of Cardiology at Children’s Hospital of Philadelphia, for speaking with us about the challenges and opportunities associated with building a CHD transition program.
Published June 7, 2021