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@article{Diller:2015:10.1161/CIRCULATIONAHA.115.017202,
author = {Diller, G-P and Kempny, A and Alonso-Gonzalez, R and Swan, L and Uebing, A and Li, W and Babu-Narayan, S and Wort, SJ and Dimopoulos, K and Gatzoulis, MA},
doi = {10.1161/CIRCULATIONAHA.115.017202},
journal = {Circulation},
pages = {2118--2125},
title = {Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre},
url = {http://dx.doi.org/10.1161/CIRCULATIONAHA.115.017202},
volume = {132},
year = {2015}
}

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TY  - JOUR
AB  - Background—Adult congenital heart disease (ACHD) patients have ongoing morbidity and reduced long-term survival. Recently, the importance of specialized follow-up at tertiary ACHD centers has been highlighted. We aimed to assess survival prospects and clarify causes of death in a large cohort of patients at a single, tertiary center.Methods and Results—We included 6969 adult patients (age 29.9±15.4 years) under follow-up at our institution between 1991 and 2013. Causes of death were ascertained from official death certificates. Survival was compared with the expected survival in the general age- and sex-matched population, and standardized mortality rates were calculated. Over a median follow-up time of 9.1 years (interquartile range, 5.2–14.5), 524 patients died. Leading causes of death were chronic heart failure (42%), pneumonia (10%), sudden-cardiac death (7%), cancer (6%), and hemorrhage (5%), whereas perioperative mortality was comparatively low. Isolated simple defects exhibited mortality rates similar to those in the general population, whereas patients with Eisenmenger syndrome, complex congenital heart disease, and Fontan physiology had much poorer long-term survival (P<0.0001 for all). The probability of cardiac death decreased with increasing patient’s age, whereas the proportion of patients dying from noncardiac causes, such as cancer, increased.Conclusions—ACHD patients continue to be afflicted by increased mortality in comparision with the general population as they grow older. Highest mortality rates were observed among patients with complex ACHD, Fontan physiology, and Eisenmenger syndrome. Our data provide an overview over causes of mortality and especially the spectrum of noncardiac causes of death in contemporary ACHD patients.
AU  - Diller,G-P
AU  - Kempny,A
AU  - Alonso-Gonzalez,R
AU  - Swan,L
AU  - Uebing,A
AU  - Li,W
AU  - Babu-Narayan,S
AU  - Wort,SJ
AU  - Dimopoulos,K
AU  - Gatzoulis,MA
DO  - 10.1161/CIRCULATIONAHA.115.017202
EP  - 2125
PY  - 2015///
SN  - 0009-7322
SP  - 2118
TI  - Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre
T2  - Circulation
UR  - http://dx.doi.org/10.1161/CIRCULATIONAHA.115.017202
UR  - http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000366187100004&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=1ba7043ffcc86c417c072aa74d649202
UR  - https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.115.017202
UR  - http://hdl.handle.net/10044/1/43174
VL  - 132
ER  -

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