Introduction: Clinical experience with neuroendocrine tumours (NET) is difficult to acquire because they are rare and heterogeneous. The impact of recently published guidelines on diagnosis and therapy of NET is not known. The German NET-Registry offers a unique possibility to analyse data on diagnostic/therapeutic performance in a wide range of institutions. This study posed three questions: who provides the care for patients with NET; do the diagnostic/therapeutic procedures comply with guidelines; and are the results comparable to the literature?
Patients and methods: Centres were defined as any institution that cares for at least five NET patients. Data were accrued from patients files by two study-nurses and transferred to a dedicated database (160 questions). Between 2004 and 2007, 1263 patients from 21 centres were included.
Results: Data on tumour location, age and sex, compared well with published data. Most patients were cared for in very large (>100 patients, 47.9%) or large (2099 patients, 46.1%) centres. Imaging results (MRI, CT, US) were available for 79% of the patients, laboratory tests (chromogranin A, 5-hydroxyindolacetic acid, specific hormones) for 67%, somatostatin receptor scintigraphy for 56% and pathological findings for 79%. High-quality pathology reports were rare (2%). Surgery was the first therapy in 70.9%, nonsurgical treatment the second therapy in 45.7% of the patients. Peptide radio-receptor therapy was used more often than ablative therapy as second-line treatment. Median follow-up was 2.8 year (0.46.4), median overall survival was 2.5 year (0.346.3). Mortality was unrelated to tumour location.
Conclusions: Very large centres treated the majority of patients. These centres adhered best to the guidelines. However, there were still significant deficiencies in the documentation of diagnostic results, mainly concerning pathology reports. These deficits may negatively interfere with therapeutic decision-making. The therapeutic strategies used were comparable between the centres. These data provide a basis for quality management in NET.
25 - 29 Apr 2009
European Society of Endocrinology