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Title: Determining transition readiness in congenital heart disease: Assessing the utility of the Transition Readiness Questionnaire

item CHALLMAN, MELISSA - Baylor College Of Medicine
item SALCICCIOLI, KATHERINE - Baylor College Of Medicine
item BONADUCE DE NIGRIS, FRANCESCA - Baylor College Of Medicine
item Thompson, Deborah - Debbe
item LOPEZ, KEILA - Baylor College Of Medicine

Submitted to: Congenital Heart Disease
Publication Type: Abstract Only
Publication Acceptance Date: 6/14/2017
Publication Date: 10/4/2017
Citation: Challman, M., Salciccioli, K.M., Bonaduce De Nigris, F., Thompson, D.J., Lopez, K. 2017. Determining transition readiness in congenital heart disease: Assessing the utility of the Transition Readiness Questionnaire [abstract]. Congenital Heart Disease. 12(5):684-685.

Interpretive Summary:

Technical Abstract: The Transition Readiness Assessment Questionnaire (TRAQ) is a tool commonly used to assess transition readiness in adolescents with chronic diseases. It was previously validated in youth with special health care needs (YSHCN), but no patients with congenital heart disease (CHD) were included in the study. CHD patients may have neurocognitive deficits that impair their ability to understand TRAQ or other disease-specific needs which may make the tool less useful. The objective of this study was to determine if the TRAQ contains language and content suitable for adolescents with CHD. The TRAQ was administered to adolescent patients with moderate or complex congenital heart disease. In-depth cognitive behavioral interviews were conducted and qualitatively analyzed to evaluate understanding of the questionnaire items and response options as well as determine any topics adolescents with CHD felt were missing. Results: Adolescents aged 15–20 with moderate to severe CHD were consecutively interviewed until thematic saturation was reached (n=9). Participants were able to accurately define and comprehend the majority of key phrases and concepts contained in the questionnaire, although key concepts such as "self-advocacy" were less consistently understood. They felt the response options were clear and appropriate. Topics that were globally felt to be missing from the TRAQ were related to exercise, psychosocial well-being, knowledge about specific heart conditions, and understanding medical emergencies for patients with CHD. Our data suggest that while the language and content of TRAQ can be largely understood by adolescents with moderate to severe CHD, there are several knowledge and skill areas specific to CHD that are missing for this particular group of chronic disease adolescents and should be considered for future transition assessments for adolescents with CHD.