10.6084/m9.figshare.7370198.v1 Karppinen N. Karppinen N. Lindén R. Lindén R. Sintonen H. Sintonen H. Tarkkanen M. Tarkkanen M. Roine R. Roine R. Heiskanen I. Heiskanen I. Matikainen N. Matikainen N. Schalin-Jäntti C. Schalin-Jäntti C. Supplementary Material for: Health-Related Quality of Life in Patients with Small Intestine Neuroendocrine Tumors Karger Publishers 2018 Health-related quality of life Small intestine neuroendocrine tumor Carcinoid syndrome Depression Diarrhea 5-Hydroxyindoleacetic acid Chromogranin A 2018-11-21 10:36:54 Dataset https://karger.figshare.com/articles/dataset/Supplementary_Material_for_Health-Related_Quality_of_Life_in_Patients_with_Small_Intestine_Neuroendocrine_Tumors/7370198 <b><i>Background:</i></b> The prevalence of small intestine neuroendocrine tumors (SI-NETs) is increasing. Disease progression is often slow and treatment options and long-term survival rates have improved, but little is known about health-related quality of life (HRQoL) in these patients. <b><i>Objective:</i></b> To assess HRQoL and its predictors in SI-NET patients receiving contemporary treatments. <b><i>Methods:</i></b> We measured HRQoL with 15D and SF-36 questionnaires in 134 SI-NET patients and compared the 15D results to those of an age- and gender-standardized sample of the general population (<i>n</i> = 1,153). In the patients, we studied the impact of treatments, Ki-67, liver metastases, circulating tumor markers, comorbidities, and/or socioeconomic factors on HRQoL with linear regression analysis. <b><i>Results:</i></b> The mean disease duration of the patients was 81 (4–468) months, 91% had metastatic disease, and 79% received somatostatin analog treatment. Hepatic tumor load was 0% in 44.8%, < 10–25% in 44.0%, and > 25% in 11.2%, respectively. Mean fP-CgA and S-5HIAA concentrations were 15 (1.3–250) and 344 (24–7,470) nmol/L, respectively. Overall, HRQoL was significantly impaired in patients compared to controls (15D score 0.864 ± 0.105 vs. 0.905 ± 0.028, <i>p</i> < 0.001). SI-NET patients scored worse on 9 of 15 dimensions: sleep, excretion (i.e., bladder and bowel function), depression, distress, vitality, sexual activity (<i>p</i> < 0.001), breathing, usual activities, and discomfort and symptoms (<i>p</i> < 0.01–0.05). SF-36 scores were impaired and highly correlated with 15D scores (<i>p</i> < 0.001). HRQoL was impaired in patients with (<i>n</i> = 85) compared to patients without (<i>n</i> = 49) impaired excretion (0.828 vs. 0.933, <i>p</i> < 0.001). In the patient group, number of medications predicted impaired HRQoL. <b><i>Conclusions:</i></b> Despite contemporary treatments, SI-NET patients have severely impaired HRQoL, including diarrhea, sleep, depression, vitality, and sexual activity.