Response to Letter Regarding Article, “Children and Adults With Congenital Heart Disease Lost to Follow-Up: Who and When?”
We appreciate the letter from Winter et al about our study entitled, “Children and Adults With Congenital Heart Disease Lost to Follow-Up: Who and When?”1 The collaborative effort in the Netherlands among healthcare providers who care for patients with adult congenital heart disease (ACHD) should be admired for raising public awareness and for bringing previously lost patients back into ACHD care.
We agree with these authors that variation in rates of loss to follow-up inevitably exists. These differences likely relate to a variety of factors, including not only differences in geography, as Winter and colleagues point out, but also differences in healthcare funding, availability of ACHD expertise, and resources available to identify and seek patients lost to follow-up. As we pointed out in the Discussion section of our article, patients with ACHD face challenges with employability and insurance,2 and in jurisdictions without universal healthcare coverage, unlike Canada and the Netherlands, the proportion of patients with ACHD lost to follow-up may be even higher.
There are several important differences in the methodology that we used and the methodology described by Winter et al. We followed a cohort consisting of all people born with congenital heart disease in Quebec in 1983 who were diagnosed before 6 years of age and were still alive in 2005. Therefore, we were certain as to the denominator (ie, the number of patients needing follow-up). Winter and colleagues have estimated the ACHD population in the Netherlands at 25 000, but this is not based on an actual measurement. With an adult population in February 2009 of approximately 12.9 million,3 we would anticipate that the ACHD population in the Netherlands would actually number 52 700 adults if its prevalence among adults is similar to the 4.09/1000 measured in Quebec.4
Although the number of patients with ACHD still receiving cardiology care is important, so too is the training and expertise of the treating cardiologist(s). The Netherlands group acknowledges that 9500 patients were receiving cardiology care in nonuniversity hospitals. Many patients with ACHD in Canada also are not followed up in specialized ACHD centers. Media campaigns and patient-driven organizations5 may help us close this gap. Unfortunately, the number of ACHD-trained cardiologists is insufficient to meet the needs of this rapidly growing population. To that end, we may follow the example set by our colleagues in the Netherlands by initiating a media campaign entitled, “Wanted: ACHD Doctors!”
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.
Demographic data on The Netherlands. Wikipedia. http://en.wikipedia. org/wiki/The_Netherlands. Accessed November 10, 2009.
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.
Adult Congenital Heart Association Web site. http://www.achaheart.org/. Accessed November 11, 2009.