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Most congenital heart disease [CHD] is diagnosed and treated in early childhood in designated children’s hospitals with parents responsible for decision-making and receipt of information. The adolescent assumes this role in preparation for transition to an adult congenital heart program. We studied the knowledge base of our adolescent CHD patients and their parents.
Established patients with CHD, >11 y.o. and their parents, were independently surveyed in the outpatient clinic prior to being seen over a one-year period. Participation was voluntary. Cardiomyopathy, transplant and electrophysiology patients were excluded. Scores were assessed as full, partial or incomplete.
Most (98% parents; 83% adolescents) reported that their cardiologist had provided education. Adolescents provided a full (49%) and partial (15%) medical name and full (32%) and partial (35%) description of their condition. Older adolescents performed better (p<0.005). Parents scored better, regardless of patient age (p<0.005). Patients undergoing last surgery >11 y.o. scored better than those with surgery only when younger or without surgery (p<0.05). Patients with mild unrepaired or surgically repaired shunt lesions (ASD, VSD, PDA), and their parents, were much less able to name their lesion than those with left heart lesions (aortic stenosis, coarctation, mitral valve disease), tetralogy of Fallot, TGA/TAPVR or palliated single ventricles, but similar in ability to at least partially describe the defect (p<0.005). In this more affected population, the ability to fully name the defect (81/134; 60%) far exceeded the ability to fully describe it (37/134; 28%; p<0.005). Patients with complex lesions were more likely to report effect on exercise ability, work and recreation.
Less than one-half of adolescents are able to name their cardiac defect, and one-third are able to adequately describe the anatomy. Older adolescents, those with a more recent history of surgery and those with more complex defects perform better. A stronger emphasis should be placed on educating and preparing adolescents and young adults earlier and over many years regardless of complexity of CHD.
Cardiology | Congenital, Hereditary, and Neonatal Diseases and Abnormalities | Pediatrics
Finn, Pamela; Gelatt, Mark; Marshall, Jennifer A.; Panuco, Jennifer; and Schmidt, Jenea, "Knowledge Base of Adolescents with Congenital Heart Disease" (2018). Posters. 228.