(35) Creating HeartBEAT (Be an Educated Adolescent and Teen): Understanding Adolescent Health Needs in Children with Congenital Heart Disease

Background: As lifesaving treatments advance, there is huge growth in the number of patients with congenital heart disease (CHD) entering adolescence. Adolescents experience pubertal changes and form their own social, gender, and sexual identities. This metamorphosis can be more complicated when managing a chronic health condition. The pediatric cardiology division at our institution aims to better serve the adolescents in the cardiology division in a multidisciplinary fashion. To guide the structure of care, our institution queried caregivers of children with CHD on the timing and needs for adolescent medicine and pediatric adolescent gynecology (PAG) services.

Methods: This was a single site, cohort survey approved by the IRB (STUDY1082). Pediatric cardiologists, adolescent medicine specialists, and pediatric & adolescent gynecologists developed a poll published on a closed Facebook group for caregivers of children with CHDs who receive care from the pediatric cardiology group at our institution. The group is moderated by a caregiver who approved the poll and made it available for 7 days. Members responded anonymously, only once, and could select multiple answers. Results were shared with the multidisciplinary physician group. Basic statistics were used for analysis.

Results: There were 17 respondents to the survey. The top concerns respondents wanted addressed by adolescent medicine services were mental health (N=16, 94.1%), sexually transmitted infections (N=9, 53.0%), and gender identity (N=4, 23.5%). The most important concerns through PAG services were menstrual concerns (N=11, 68.8%), sexual health (N=8, 50.0%), and pre-conception counseling (N=8, 50.0%). Respondents were split on what age to start receiving subspecialist care: 10 (N=6, 35.3%), 12 (N=4, 23.5%), or 15 (N=6, 35.3%) years old; three (17.6%) wanted referral only if a problem arose. Regarding mode of appointments, the majority (N =10, 58.9%) were open to either in-person or telehealth appointments.

Conclusions: Our study shows that caregivers of patients with CHD are interested in early health services specific to adolescence. It highlights the desire of caregivers for providers to discuss mental health, gender identity, menstrual concerns, and pre-conception counseling when meeting with an adolescent with CHD. Our study is limited by convenient sampling of a potentially biased group of caregivers. Nevertheless, with this community’s guidance, we plan to create the HeartBEAT Program, a multidisciplinary intervention to empower our young patients with CHD as they move through adolescence.