Funder: South African Medical Research Council (MRC)

The main aim of this project, initiated in November 2016, is to gain a better understanding of the role of healthcare system factors in determining care gaps among adolescents with complex chronic conditions. In this project, young persons with Congenital or Rheumatic Heart Disease (CHD/RHD) are investigated as sample cases for the broader spectrum of complex chronic conditions. The specific objectives are: (1) to investigate the prevalence of care gaps in young persons with CHD and RHD in South Africa and Sweden; (2) to identify hospital-related predictors and healthcare system factors, above and beyond patient-related predictors, for discontinuation of cardiac follow-up in young persons with CHD and RHD; and, (3) to determine the impact of care gaps in young persons with CHD or RHD in South Africa and Sweden.

The project will use both quantitative and qualitative research methods. The quantitative component of the study comprises an international, multi-centre, longitudinal study in six centres in South Africa (Cape Town, Port Elizabeth) and Sweden (Gothenburg, Lund, Stockholm, UmeƄ). Patients are to be selected from the paediatric cardiology outpatient clinic visit lists. Overall, 1500 patients will be included, providing sufficient data to reliably investigate the potential influence of the different patient, hospital and healthcare system related characteristics on care gaps.


 Outpatient volumes and medical staffing resources as predictors for continuity of follow-up care during transfer of adolescents with congenital heart disease