As the number of congenital heart defect (CDH) survivorship clinics has grown nationwide, some cardiologists worry the programs may not be sustainable. Clinics must balance patient demand, specialist availability, and other care coordination needs in their quest to help patients remain healthy. However, families who have benefited from the long-term follow-up programs say they are worth the effort.
“The beauty of the survivorship clinic is they look at [the patient] as a general heart disease patient with these comorbidities, vs. a liver patient and gastroenterology patient,” says Jodi Lemacks, whose son Joshua was diagnosed with a liver disorder (and treated promptly) thanks to the Single Ventricle Survivorship Clinic, part of the Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program
at Children’s Hospital of Philadelphia (CHOP). Joshua had heart surgery as a baby.
See how different hospitals around the country — including CHOP — are approaching CDH survivorship clinics. Read the full story: All Together Now? Exploring the Pros & Cons of CHD Survivorship Clinics.