Supplementary Material for: Health-Related Quality of Life in Patients with Small Intestine Neuroendocrine Tumors

Background: 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. Objective: To assess HRQoL and its predictors in SI-NET patients receiving contemporary treatments. Methods: 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 (n = 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. Results: 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, p < 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 (p < 0.001), breathing, usual activities, and discomfort and symptoms (p < 0.01–0.05). SF-36 scores were impaired and highly correlated with 15D scores (p < 0.001). HRQoL was impaired in patients with (n = 85) compared to patients without (n = 49) impaired excretion (0.828 vs. 0.933, p < 0.001). In the patient group, number of medications predicted impaired HRQoL. Conclusions: Despite contemporary treatments, SI-NET patients have severely impaired HRQoL, including diarrhea, sleep, depression, vitality, and sexual activity.背景：小肠神经内分泌肿瘤（small intestine neuroendocrine tumors, SI-NETs）的患病率呈逐年上升趋势。尽管该疾病进展通常较为缓慢，治疗手段与长期生存率均已得到改善，但目前对这类患者的健康相关生存质量（health-related quality of life, HRQoL）状况仍知之甚少。 目的：评估接受当代治疗方案的SI-NET患者的HRQoL及其预测因子。 方法：本研究采用15D量表与SF-36量表对134例SI-NET患者的HRQoL进行评估，并将其15D评分结果与经年龄、性别标准化的普通人群样本（n=1153）进行对比。同时，通过线性回归分析，探究治疗方案、Ki-67指数、肝转移、循环肿瘤标志物、合并症及社会经济因素对患者HRQoL的影响。 结果：本研究纳入患者的平均病程为81（4~468）个月，其中91%存在转移性疾病，79%接受了生长抑素类似物治疗。肝脏肿瘤负荷分布为：44.8%的患者为0%，44.0%为10%~25%以下，11.2%为25%以上。患者的fP-CgA与S-5HIAA平均浓度分别为15（1.3~250）nmol/L与344（24~7470）nmol/L。总体而言，与对照组相比，SI-NET患者的HRQoL显著受损：15D评分分别为0.864±0.105与0.905±0.028，p<0.001。SI-NET患者在15个维度中有9个维度评分更低，包括睡眠、排泄（即膀胱与肠道功能）、抑郁、精神苦恼、精力、性活动（p<0.001）、呼吸功能、日常活动能力以及不适与症状（p<0.01~0.05）。SF-36评分同样受损，且与15D评分呈显著相关（p<0.001）。存在排泄功能受损的患者（n=85）其HRQoL显著差于无排泄功能受损的患者（n=49，0.828 vs 0.933，p<0.001）。在患者群体中，用药数量是HRQoL受损的预测因素。 结论：尽管接受了当代治疗方案，SI-NET患者仍存在严重的HRQoL受损，具体涉及腹泻、睡眠、抑郁、精力与性活动等多个方面。