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Outcome of Operated and Unoperated Adults With Congenital Cardiac Disease Lost to Follow-Up for More Than Five Years Annette Wacker, MD, Harald Kaemmerer, PhD, Regina Hollweck, MSc, Michael Hauser, PhD, Marc Andre Deutsch, MS, Silke Brodherr-Heberlein, MD, Andreas Eicken, MD, and John Hess, PhD Many patients with congenital cardiac disease need a regular cardiologic follow-up (FU) even after success- ful primary treatment. Nevertheless, many of them are lost to FU. The present study verifies for the first time the outcome of adults with congenital cardiac disease lost to FU of a specialized institution for >5 years. 2005 by Excerpta Medica Inc. (Am J Cardiol 2005;95:776 –779) T he objective of the present study was to evaluate the rate and outcome of surgically treated and nonsurgically treated adults with congenital cardiac disease (CCD) who were lost to follow-up (FU) for 5 years. ••• In 2003, the registry of the German Heart Center in Munich contained 10,500 patients diagnosed and/or treated for CCD or referred for suspicion of CCD who reached adulthood (18 years). All surgically treated and nonsurgically treated adults with CCD who failed to return for a scheduled FU visit for 5 years were contacted, were sent letters of explanation, and re- quests to fill in enclosed written questionnaires. The questionnaires dealt with the health situation, sports, education, occupation, and medical care. Medical records of the included adults were re- viewed for patient demographics and diagnosis. Pa- tients were classified according to the proposals of Fyler et al, 1 who used these classifications in the New England regional infant cardiac program. The current functional status of the patients was determined by review of the patient’s questionnaire. Patients were classified according to their response letters using 4 functional classes (FCs) 2 : (1) FC I described patients who were asymptomatic at all lev- els of activity; (2) FC II described patients with symp- toms who did not curtail average everyday activity; (3) FC III described patients with symptoms who From the Klinik für Kinderkardiologie und angeborene Herzfehler, Deutsches Herzzentrum München, Klinik an der Technischen Univer- sität München, München; and Institut für Medizinische Statistik und Epidemiologie, Klinikum Rechts der Isar, München, Germany. Dr. Kaemmerer’s address is: Klinik für Kinderkardiologie und angeborene Herzfehler, Deutsches Herzzentrum München, Lazarettstrasse 36, D-80636 München, Germany. E-mail: Kaemmerer@dhm.mhn.de. Manuscript received August 17, 2004; revised manuscript received and accepted November 15, 2004. FIGURE 3. Peak gradient and aortic valve area (AVA) index in patients with a loud (>3) systolic murmur. Eighteen of the 22 patients with a loud murmur, whose height was <170 cm (filled squares), had severe aortic stenosis and are clustered in the left upper quadrant of the graph. Patients with a loud murmur, whose height was >170 cm (open squares) are distributed al- most equally over the 4 quadrants. 776 ©2005 by Excerpta Medica Inc. All rights reserved. 0002-9149/05/$–see front matter The American Journal of Cardiology Vol. 95 March 15, 2005 doi:10.1016/j.amjcard.2004.11.036