Veel volwassenen met een aangeboren hartaandoening niet meer onder controle

Objective

Identification of adults with congenital heart disease (CHD) who were lost to cardiological follow-up.

Design

Cross-sectional study.

Method

Adults with CHD and not under cardiological follow-up were asked via a nationwide publicity campaign to contact the CONCOR (CONgenital CORvitia) project group.

Results

A total of 593 patients with mild (85%) to moderate-severe (15%) CHD were registered via the nationwide campaign. Of these patients, 66% were examined within 1 year by a cardiologist. Additional cardiac follow-up was necessary within 1 year in 22% of these patients. In 16% of the patients, new residual lesions were found; and in three of these patients the pulmonary valve required replacement.

Conclusion

During this comprehensive nationwide campaign it became clear that a considerable number of adults with CDH fail to receive regular cardiac care. However, after surgical correction of CHD in childhood, residual lesions are common in this population. Threatening residual lesions can be present asymptomatically. Cardiological follow-up is therefore almost always necessary, also in patients without symptoms. Patients with CHD as well as their medical care personnel need to be well informed of this.

Conflict of interest: none declared. Financial support: for the national campaign, CONCOR received a contribution without further conditions from the Netherlands Society of Cardiology. The sponsor had no role in the analysis and interpretation of the data, the preparation of the manuscript, or its approval.

This supplementary information is presented as submitted by the corresponding author. It has not been copy-edited by NTvG.