Project summary
Developing the best picture yet, internationally, of the burden of disease on young adults with congenital heart problems, across the life course.
What is the issue for NSW?
Professor David Celermajer leads a multidisciplinary clinical and research team caring for young adults with congenital heart disease (CHD), an important and growing sector of the community, at the Adult Congenital Heart Centre. With major advances in treatments for children with heart disease since the 1970s, an increasing number of survivors with complex heart problems have now reached adult life and require ongoing expert care.
What does the research aim to do and how?
The comprehensive Adult Congenital Heart Centre at Royal Prince Alfred Hospital is the biggest in the Southern Hemisphere and looks after several thousand young adults with complicated and often difficult ongoing heart problems. These young adults need expert care for their medical needs but also their psychosocial and mental health needs also.
The team involves nurse specialists, psychologists, exercise physiologists, dieticians and of course cardiologists, cardiac surgeons and other medical specialists. The current project aims to conduct the first comprehensive survey of the “life experience” of adolescents and young adults with congenital heart disease”. The eventual aim is to develop the best and most effective strategy for delivering the best wholistic, clinical care.
The research program aims to profile the health and social outcomes for CHD patients and their parents and to determine their healthcare utilisation through data linkage with important health databases across Australia. Consumer engagement is an important issue in determining the best way to provide optimal CHD care, throughout an individual’s life.
The project involves assessing the psychosocial, mental health, neurocognitive and quality of life outcomes for young adults with congenital heart disease, as well as physical assessments such as body composition and fitness. The project will account for their educational level and employment history, and will study their health services utilisation. It will also look at financial impacts and employment disruption.
This research aims to give the best picture yet, internationally, of the burden of disease on young adults with congenital heart problems, across the life course.