The use of validated quality of life questionnaries in patients with neuroendocrine tumors. the results of the national multicenter study (SAS-LAR-QOL) of 93 patients

Background: Neuroendocrine tumors (NET) are rare malignancies. There are limited data of the effectiveness of the long-term somatostatin analogue treatment for the quality of life in our country. The objective of our observational study was to assess the change of patients' quality of life receiving long-term) using two validated®somatostatin-analogue treatment (Sandostatin-LAR questionnaries. Patients and Methods: A multicenter observational study was performed between 2005–2007 in Hungary. 93 patients were included, among them there were 58 men and 35 women. The mean age at the diagnosis 12.7 years, 54 patients (59%) had liver metastasis.±of NET was 57.7 After inclusion the patients had four visits at 3-months intervals. At each visit they filled QLQ-C30 and QLQ-GI.NET21 questionnaries. We converted the four-possibilities answers (from No to Yes) to numerous scale (0–33.3–66.6–100 scores) to help evaluation. We compared the initial and final results. Results: Concerning QLQ-C30 a significant (p=0.02) improvement was observed regarding diarrhoea. Significant worsening was observed in role function (p<0.0001), in nausea-vomiting (p=0.01), sleep disturbancies (p=0.02) and financial state (p=0.02). The cause of the worsening could be the chronic and progressive feature of the disease. Concerning QLQ-GI.NET21 questionnary a significant improvement was observed in nocturnal sweating (p=0.02), in hyperacidity/pyrosis (p=0.02), in worries about test results (p=0.02) and in close relatives disturbed by the illness or therapy of their beloved one (p=0.02). A significant decrease was observed in the subgroup of patients with “quite a bit or very much“ replies upon the introductory visit, regarding hot flashes (p=0.006, n=14) and facial blushing (p=0.002, n=18). Conclusion: The special QLQ-GI.NET21 questionnary proved to be more useful to prove the efficacy of the long-term somatostatin-analogue treatment than QLQ-C30.