Related projects

Adole7C (AdolesCents reCeiving Continuous Care for Childhood-onset Chronic Conditions)

Prevalence and predictors of loss of follow-up of people with congenital heart defects and rheumatic heart disease (RHD)

Sometimes medical follow-up for young people ceases after the transfer to adult care, which can lead to increased risk of complications. International data have shown that between 21-76% are not under medical monitoring. Data on the prevalence of non-follow-up in patients with ConHD i is lacking in Sweden and South Africa. The main purpose of the present study is to scrutinize the epidemiology, determinants and outcomes of lost to follow-up in young persons with ConHD and RHD in Sweden, Belgium and South Africa. This is of paramount importance to provide optimal and continuous care to afflicted individuals. The specific aims of the study are:

  • to investigate the proportion of patients with ConHD and RHD in Sweden and South Africa who continued/ceased cardiac follow-up when they reached adulthood, and in which type of setting this follow-up is performed. This allows to investigate whether the follow-up is in line with international guidelines
  • to identify patient-related and hospital-related predictors for discontinuation of cardiac follow-up in young adults with ConHD and RHD;
  • to determine the impact of lost to follow-up in terms of mortality, morbidity and health care consumption. Data acquisition in progress

This project is a collaboration with the University of Cape Town, South Africa and KU Leuven, Belgium