Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider

Nadia A Clarizia, Nita Chahal, Cedric Manlhiot, Jennifer Kilburn, Andrew N Redington, Brian W McCrindle
Canadian Journal of Cardiology 2009, 25 (9): e317-22

BACKGROUND: Pediatric institutions play a large role in preparing young adults with congenital heart disease to transition to adult care.

OBJECTIVE: To determine the perspectives of patients, parents and providers on transition preparation.

METHODS: Patients aged nine to 18 years with congenital heart defects and their respective parent(s) participated in semistructured interviews. Health care providers completed a self-administered survey.

RESULTS: A total of 23 patients, 22 parents and 45 health care providers were enrolled in the study. Only 36% of patients demonstrated a clear understanding of transition and its implications for their cardiac care. Parents were extensively involved in care activities, with 95% accompanying their child to visits at the clinic, 68% staying with their child for the entire visit and 45% administering their medication. Children more knowledgeable about their diagnosis demonstrated a better understanding about their transition to adult care (100% versus 7%, respectively; P<0.01) and were more likely to communicate directly with their providers than those who were less or not knowledgeable (88% versus 33%, respectively; P=0.03). Nurses were more likely than physicians to view increased parental involvement in care activities as a barrier to transition preparation (37% versus 5%, respectively; P=0.02).

CONCLUSIONS: A lack of clear role expectations indicates a need for the pediatric health care setting to adapt appropriately to address the shifting needs of adolescent and young adult patients and their families. A formalized approach to transition preparation for adolescents with congenital heart disease needs to emphasize comprehensive education. A delegation of explicit responsibilities and the clear definition of roles for parents, providers and patients are necessary to provide young adults with the resources and support necessary to achieve a successful transition to adult care.

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