Grant: Operating Grant

There have been major advances in the care of children born with heart defects ("congenital heart disease"- CHD) over the past 3 decades. Now over 90% of children with CHD reach adulthood. These young adult "survivors" are at risk of further heart problems. Unfortunately, over half of them do not attend specialized adult CHD clinics after graduating from their children's hospital and childhood heart specialist. This increases the risk that new heart problems, which may develop at any time, will be discovered too late. Transition is the planned movement of adolescents with chronic health conditions from child to adult healthcare. National bodies have published guidelines about helping adolescents move to adult healthcare. However, there is no research regarding the effectiveness of CHD transition programs. Data is urgently needed. The aim of this research is to determine whether a nurse-led transition intervention is better than usual care (i.e., whatever their heart specialists and nurses already do) in preparing adolescents with CHD to independently manage their healthcare. We will enroll 16-17 year olds with CHD from the Cardiology clinics of two children's hospitals. One hundred and twenty teens will be assigned to participate in either the transition intervention or to receive usual care alone. The transition intervention consists of two one-on-one sessions (2 months apart) with a nurse in the children's hospital. The most important finding will be the timeliness with which adolescents attend the adult CHD clinic for the first time, relative to when they were advised to attend. We will also study participant's knowledge of their heart condition, self-management skills, and satisfaction with their healthcare using established questionnaires. This is the first study to assess the value of transition programs in CHD. The results of this study will be important to the many youth living with other chronic health problems.