189
Participants
Start Date
July 1, 2016
Primary Completion Date
June 30, 2021
Study Completion Date
June 30, 2021
Transition program
Participants will be part of a transition program with eight key components: 1. A transition coordinator; 2. Education on congenital heart disease (CHD), treatments, health behavior, dealing with school, friends; 3. Telephone availability; 4. Information about the Grown-Up Congenital Heart Disease (GUCH) program: 5. Guidance of parents; 6. Meeting with peers: 7. A person-centered transition plan; and 8. Transfer to Grown-Up Congenital Heart Disease clinic. The intervention will be implemented by specialized nurses at the outpatient clinic of pediatric cardiology. Overall, 60 to 90 minutes per patient are spent over the 2.5 years.
Children's Heart Center, Queen Silvia Children and Youth Hospital, Gothenburg
Children Outpatient Clinic, Linköping University Hospital, Linköping
Children's Heart Center, Skåne University Hospital, Lund
Child and Adolescent Clinic, Örebro University Hospital, Örebro
Children's Outpatient Cardiology Clinic, Astrid Lindgrens Children's Hospital, Stockholm
Children's Outpatient Cardiology Clinic, Norrland University Hospital, Umeå
Children's Outpatient Cardiology Clinic, Academic Children's Hospital, Uppsala
Swedish Heart Lung Foundation
OTHER
Swedish Children Heart Association
UNKNOWN
The Swedish Research Council
OTHER_GOV
Sahlgrenska University Hospital
OTHER
Skane University Hospital
OTHER
Norrlands University Hospital
OTHER
Karolinska University Hospital
OTHER
Swedish Council for Working Life and Social Research
OTHER
Göteborg University
OTHER