Thursday, May 04, 2006

Care for Adult Congenital Heart Disease

I was asked a few months ago, about the availability of specialist care centres for adult with congenital heart disease (ACHD). The recent issue of the European Heart Journal published a survey of the specialist centers for treatment of adults with congenital heart disease. The survey was voluntary and conucted by Dr Philip Moons and his team. Dr P Moons, the assistant professor at the Center for Health Services and Nursing Research of the Catholic University of Leuven, Belgium, led the research.

71 centers, in 4 countries, who took care of ACHD took part in the survey. These included 48 specialist centers and 23 non-specialist centers, only 14 of which work in collaboration with the specialist centers. The other 9 were functioning on their own. There were an estimated 1.2 ACHD in europe covered by the 4 countries who choosed to take part in the survey. The overall true situation will not be known, as many countries did not participate in this survey.

It is indeed sad that we do so much to help children and babies with congenital heart disease and yet when they make it to adult life, we do so little to help them. Many of the specialist centers, do not have specialist with experience in dealing with ACHD, and those who do often do not have nurse specialist to help and no peadiatric cardiologist to collaborate with. Basically, the standard of care for ACHD is far from satisfactory. Perhaps with enough research and data accumulated, Europe and the world will slowly wake up to the fact that although it is very important to effectively treat babies with congenital heart disease, it is equally important to give effective followup treatment for those adults who have survive their congenital heart disease till adulthood. Specialist care is required for these patients as their disease, and the sequealae of their surgery require special knowledge and skill to manage. Dr Moons have rightly drawn our attention to this important problem.

What about our own country of Malaysia. Here ACHD is seen by adult cardiologist who also deal with hypertension, diabetes, coronary artery disease and heart failure with arrhythmias. Is this good enough?

1 comment:

That Girl said...

Our parental ACHD group is (obviously) very concerned with this issue. Our children are going to (we hope) grow into adults with heart defects that need to be monitored.
What we have found is that many pediatric cardiologists assume that they will be treating our children into adulthood and beyond.
And no doubt the specialty will grow to meet the need.
The problem for most of these is - there is no reasonable expectation, not enough kids have lived with chds to create a base that can be measured against.