Heart defects are the most common congenital malformation and every year around 1,000 children with congenital heart defects (ConHD) are born in Sweden. The complexity varies from mild to complex heart defects and today about 90% reach adulthood. The increased survival rate is partly due to improved treatments such as surgery and catheter interventions, new diagnostic methods but also improved intensive care and long-term follow-up. Children with ConHD sometimes need lifelong medical follow-up and when they become 18 years they are transferred for continued monitoring to adult care.
This transfer may involve the risk that the medical follow-up is terminated, intentionally or unintentionally, which can lead to an increased risk of developing complications. To reduce this risk, structured transition programs have been developed. These programs intend to support and prepare young people for increased participation and increased personal responsibility in connection with change of caregivers but also during the transition from being a child to becoming an adult.
Although transition programs have been advocated in international guidelines, consensus and working groups, no evidence of the effectiveness of such programs exists. STEPSTONES-ConHD consists of several sub-studies.
Before the intervention study is conducted, 6 preparatory studies were done which aimed at defining the components to be included in a future transfer program by:
1. Studying and describing young people and parents’ needs, attitudes and experiences of transition and transfer
2. Studying and identifying potential opportunities for improvement (baseline data, etc)
3. Studying and describing the healthcare professionals’ perceptions of transition from child to adult care in young people with various long-term illnesses
Four qualitative interview studies have been conducted with the aim to describe young people with ConHD and their parents’ needs, attitudes and experiences of transfer to adult care. The fifth preparatory study is a cross-sectional study in which questionnaires were sent out to young people with a congenital heart disease aged 14 to 17 years and their parents. Data collection is closed. Four qualitative studies have been published (See Resources/Communication). Two articles from the cross-sectional study have been published. Further analyses are ongoing from the cross sectional study.
The intervention study is a multicenter study in which a person-centered transition program for young people with ConHD will be evaluated. The program aims to support young people with ConHD so they become active partners in their own care through increased participation and increased responsibility. The study will evaluate the effect of a transition program through a randomized controlled trial (RCT) in a 3-arm design. The study will be conducted in ConHD-units all seven university hospitals in Sweden. At two units young people with ConHD will be randomly allocated to either the intervention group, which means they will follow a 2-year structured transition program or to a comparison group receiving usual care according to the current routine. The other five units will serve as a control group in which study participants receive usual care according to the current routine. Patient recruitment is ongoing.
In this study we will also assess the process of care delivery in order to understand the mechanism of impact and potential expansion to other conditions. Furthermore, we will also undertake an economic evaluation of the transition program as well as a process evaluation.
1. 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.