Langzeitverlauf von Erwachsenen mit angeborenem Herzfehler – Morbidität und Mortalität im Fokus – eine 15-jährige Beobachtungsstudie

Long-term outcome of adults with congenital heart disease - focusing on morbidity and mortality - a 15-year observational study

by Caroline Sophie Jonas
Doctoral thesis
Date of Examination:2023-08-08
Date of issue:2023-07-24
Advisor:Prof. Dr. Claudia Dellas
Referee:Prof. Dr. Theodoros Tirilomis
Referee:Prof. Dr. Ralf Dressel
Persistent Address: http://dx.doi.org/10.53846/goediss-10012

 

 

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Abstract

English

Background The population of adults with congenital heart disease (ACHD) is growing steadily. Data on the morbidity and mortality of ACHD are limited. In this longitudinal observational study, a group of ACHD with surgically corrected or palliated congenital heart defects (CHD) was studied over a 15-year period. Methods ACHD who had participated in the first study were invited for follow-up. Mortality and hospitalisation data were analysed. Results From 05/2017 to 04/2019, a total of 249/364 (68%) ACHD participated in the follow-up: 22% had mild CHD, 55% had moderate CHD and 23% had severe CHD. Within the observation period of approximately 15 years between the two studies LC1 and LC2, 148 of the 249 study participants in LC2 had a hospitalisation as a defined event. Of these, 127 hospitalisations were cardiac-related. The number of patients taking medication was significantly higher in study LC2 than in study LC1. During the observation period, 24 people died. 30% of them had moderate CHD and 70% had severe CHD, corresponding to mortality rates of 0%, 0.29% and 1.68% per patient-year in ACHD with mild, moderate and severe CHD, respectively. Long-term survival was significantly reduced in patients with severe CHD compared to those with mild and moderate CHD (p < 0.001). Conclusion After correction or palliation of CHD, the sustained morbidity and mortality in ACHD patients over the 15-year observation period was notable, especially in those with moderate and severe CHD. Therefore, the results of this study underscore the need for lifelong medical management of EMAH and the urgency to research and improve EMAH medical care.
Keywords: Adults with congenital heart defect; Morbidity; Mortality; Congenital heart defect
 
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