Congenital heart diseaseAdolescents' Understanding of Their Congenital Heart Disease on Transfer to Adult-Focused Care
Section snippets
Methods
We recruited literate, Dutch-speaking adolescents with CHD to participate in our descriptive cross-sectional study. Adolescents were eligible for the study at their initial visit to the Adult Congenital Heart Disease (ACHD) program's clinic after their transfer from pediatric cardiology. At the University Hospitals of Leuven, Belgium, it is standard practice for pediatric patients with CHD to be transferred to adult-focused care when they reach 16 years of age, unless the patient is medically
Results
Fewer than 1/2 of the patients knew the name of their heart defect, and only 28% could describe their heart defect or locate the lesion on a diagram (Table 2). Most of the patients knew the frequency of follow-up required and the need for regular follow-up; however, only 46% indicated that the main purpose of follow-up was to detect clinical deterioration. Most of the patients had adequate knowledge about their past treatment. Of the 15 patients who took medications on a regular basis, 53% knew
Discussion
As they grow older, adolescents with CHD presumably take responsibility for their own health and care. Transition programs should be implemented to prepare adolescents for this task.18, 19, 20, 21 A critical element of these transition programs is developmentally appropriate education for patients18, 22 with the aim of improving the patients' level of knowledge and increasing their awareness of adopting adequate health behaviors, while taking the transition through puberty into account. With
Acknowledgment
The authors gratefully thank Sara Pinxten, MSc, Davy Dedroog, MSc, and Nadia Farroni for their help in data collection and Marylene Vereycken, MSc, for her assistance in data input.
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