Differences in cognition of transition from pediatric to adult healthcare between adolescents with congenital heart disease and their parents

Abstract

 Children with congenital heart disease (CHD) need to transition from pediatric to adult healthcare. This study aimed to clarify differences in cognition of transition between adolescents with CHD and their parents, and to determine their needs for support. An anonymous self-administered questionnaire was distributed to 40 pairs. Effective responses were collected from 35 patients (response rate 87.5%) and 32 parents (response rate 80.0%). The acquisition of disease related information by patients and explaining the disease to the people around them were identified factors that affected the transition. These factors were associated with frequent explanation of the disease by parents and provision of informational support by physicians. However, the process of transition was mainly dealt with by their parents and/or physicians. In addition, some patients were found to experience anxiety regarding changing from pediatricians to cardiologists in adult healthcare, and tended to decide against the transition due to lack of information. This indicates that patients need support such as information regarding the transition and promoting an understanding of their disease. At the same time, there is a need to consider the support required for parents to help their children to make the transition without difficulties.