Letter by Winter et al Regarding Article, “Children and Adults With Congenital Heart Disease Lost to Follow-Up: Who and When?”
To the Editor:
In their recent article, Mackie et al1 demonstrated that 61% of adult patients with congenital heart disease (CHD) in Quebec, Canada, fail to receive cardiac follow-up. In the Netherlands, we found that only one third (≈8000) of adult patients with CHD fail to receive cardiac follow-up. Therefore, caution with extrapolating these data to other nations is recommended.
On average, 200 000 children are born in the Netherlands each year. With a birth prevalence of around 8 per 1000 live births2 and an overall survival rate until adulthood of 85% since the early 1970s, there are an estimated 25 000 adult (and 25 000 pediatric) survivors of CHD in the country.3,4 In 2000, the Interuniversity Cardiology Institute of The Netherlands and the Netherlands Heart Foundation took the initiative to develop a national registry and DNA bank of adult patients with CHD, called CONgenital COR vitia (CONCOR). In January 2009, over 10 000 patients were registered in CONCOR, including almost all patients who are followed-up in 1 of the 8 Dutch university hospitals (n=7500) and 2500 patients from nonuniversity hospitals. Moreover, trained research nurses have visited all nonuniversity hospitals in the Netherlands and were able to identify another 7000 adult patients with CHD who are yet to be included in the registry. In summary, thanks to the success of CONCOR, we know that 17 000 patients receive cardiac care in the Netherlands, which leaves approximately 8000 patients who fail to receive cardiac care. These numbers are significantly lower than the 61% described by Mackie et al.1
We postulate that there are 2 main reasons for this discrepancy. Mackie et al1 state that the prevalence of CHD is 4.09 per 1000 adults, whereas our calculation is founded on the birth prevalence of 8 per 1000 live births. The use of different methods to calculate the number of patients with CHD leads to different numbers of patients who are lost to follow-up. A second explanation for the discrepancy between the number of patients who fail to receive cardiac care could be the geographic differences between Quebec and the Netherlands. Being 37 times smaller, with twice the number of inhabitants, it is never an issue to receive adequate cardiac care close to home in the Netherlands.
Although the number of patients who fail to receive follow-up is lower in the Netherlands than in Quebec, we still thought it was unacceptably high. To increase awareness of this problem and retrieve patients with CHD who were lost to follow-up, we initiated a nationwide media campaign entitled, “Wanted! 8000 Heart Patients.” Six months ago, we started our campaign with billboards throughout the country, which generated attention from patients and the media. To date, our campaign has led to articles in newspapers and magazines and to exposure on national radio and television. Within the first 6 months, we received applications from over 800 subjects with CHD. The success of our campaign is a great stimulus to continue our efforts to increase awareness in the general population and retrieve those patients who are lost to follow-up.
Mackie AS, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marelli AJ. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation. 2009; 120: 302–309.
Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation. 2007; 115: 163–172.