myVOICE-CHD
One of the most common and lethal genetic birth defects is congenital heart disease (CHD) in which most major defects are diagnosed during infancy. With improvements in treatment, however, more patients with CHD are living well into adulthood and having families of their own. Patients who engage in managing their healthcare have better health outcomes and lower healthcare costs, yet 42% of adolescents and young adults (AYAs) with congenital heart disease (CHD) are not engaging in physician-recommended specialty CHD care. Without efficacious interventions that equip AYAs with CHD to develop self-advocacy skills for engagement in patient-centered adult care, they face increased risk of lapses in care and subsequent serious complications. The overall objective of this application is to identify ways that AYAs with CHD can build self-advocacy skills and understand the ELSIs of living with CHD into adulthood.
Funded by the Utah Center for Excellence in ELSI Research (UCEER)
Rebecca Delaney, PhD
CENTER GRANT PRINCIPAL INVESTIGATORS
Erin Rothwell, PhD
James Tabery, PhD
SITE
University of Utah, Salt Lake City, UT
ACTIVELY RECRUITING
Do you or your child have moderate or
severe congenital heart disease?
If so, we would like to hear from you.
We want to learn from patients and their caregivers about the role of self-advocacy skills in their healthcare. We also want to hear your thoughts about ethical, legal, and social challenges from living with CHD. This information will improve the care and quality of life for people with CHD, especially as they prepare to transition from pediatric to adult CHD care.