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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