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Deficits in the Management of Patients With Adrenocortical Carcinoma in Germany

Please always quote using this URN: urn:nbn:de:bvb:20-opus-85897
  • Background: Adrenocortical carcinoma (ACC) is a rare tumor with a poor prognosis. Often, the physicians who first treat patients with ACC have no prior experience with the disease. The aim of our study was to evaluate the quality of medical care for patients with ACC in Germany. Methods: Data from the German ACC registry were analyzed with regard to the patients’ preoperative diagnostic evaluation, histopathological reporting, and clinical followup. The findings were compared with the recommendations of the European Network for the Study ofBackground: Adrenocortical carcinoma (ACC) is a rare tumor with a poor prognosis. Often, the physicians who first treat patients with ACC have no prior experience with the disease. The aim of our study was to evaluate the quality of medical care for patients with ACC in Germany. Methods: Data from the German ACC registry were analyzed with regard to the patients’ preoperative diagnostic evaluation, histopathological reporting, and clinical followup. The findings were compared with the recommendations of the European Network for the Study of Adrenal Tumors (ENSAT). Results: Data were analyzed from 387 patients who had been given an initial diagnosis of ACC in the years 1998 to 2009. 21% of them underwent no hormonal evaluation before surgery, and 59% underwent an inadequate hormonal evaluation. This exposed the patients to unnecessary perioperative risks and impaired their follow-up. 48% did not undergo CT scanning of the chest, even though the lungs are the most frequent site of metastases of ACC. For 13% of the patients, the diagnosis of ACC was later revised by a reference pathologist. For 11% of the patients, the histopathology report contained no information about resection status, even though this is an important determinant of further treatment and prognosis. Optimal management requires re-staging at three-month intervals, yet some patients underwent re-staging only after a longer delay, or not at all. Conclusion: We have identified significant deficits in the care of patients with ACC in Germany. We suspect that the situation is similar for other rare diseases. The prerequisite to better care is close and early cooperation of the treating physicians with specialized centers.show moreshow less

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Author: Sarah Johanssen, Stefanie Hahner, Wolfgang Saeger, Marcus Quinkler, Felix Beuschlein, Henning Dralle, Michaela Haaf, Matthias Kroiss, Christian Jurowich, Peter Langer, Wolfgang Oelkers, Martin Spahn, Holger S. Willenberg, Uwe Maeder, Bruno Allolio, Martin Fassnacht
URN:urn:nbn:de:bvb:20-opus-85897
Document Type:Journal article
Faculties:Medizinische Fakultät / Klinik und Poliklinik für Allgemein-, Viszeral-, Gefäß- und Kinderchirurgie (Chirurgische Klinik I)
Medizinische Fakultät / Urologische Klinik und Poliklinik
Medizinische Fakultät / Medizinische Klinik und Poliklinik I
Language:English
Year of Completion:2010
Source:In: DEUTSCHES ARZTEBLATT INTERNATIONAL (2010) 107, 50, 885-U9, DOI: 10.3238/arztebl.2010.0885
Sonstige beteiligte Institutionen:Comprehensive Cancer Center Mainfranken an der Universität Würzburg
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Release Date:2014/05/12
Licence (German):License LogoDeutsches Urheberrecht