Abstract：
Among the available neuroendocrine neoplasm (NEN)-specific HR-QoL scales, only the EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires have been validated in several languages. We aim to assess patients\' perceptions of these questionnaires. A cross-sectional qualitative pilot study was conducted among 65 adults from four countries with well-differentiated advanced gastro-entero-pancreatic (GEP) or unknown primary NENs. Patients completed the EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires and then a survey containing statements concerning the questionnaires. The majority of patients had a small intestine NET (52%). Most tumors were functioning (55%) and grade 2 NET (52%). Almost half of the patients identified limitations in the questionnaires, with nine (14%) patients scoring the questionnaires as poor and 16 (25%) patients as moderate. Overall, 37 (57%) patients were positive towards the questionnaires. Approximately a quarter of patients considered the questionnaires not suitable for all ages, missing some of their complaints, not representative of their overall HR-QoL regarding the treatment of their NET and too superficial. The current validated EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires may show some limitations in the design of questions and the patients\' final satisfaction reporting of the questionnaire. Large-scale, high-quality prospective studies are required in HR-QoL assessment regarding NETs.
摘要：
在可用的神经内分泌肿瘤(NEN)特异性HR-QoL量表中，只有EORTCQLQ-C30和EORTCQLQ-G.I.NET21问卷以多种语言进行了验证。我们的目的是评估患者对这些问卷的看法。在来自四个国家的65名患有分化良好的晚期胃肠道胰腺（GEP）或未知原发性NEN的成年人中进行了横断面定性试点研究。患者完成EORTCQLQ-C30和EORTCQLQ-G.I.NET21问卷，然后进行包含有关问卷陈述的调查。大多数患者有小肠NET（52％）。大多数肿瘤功能正常（55％）和2级NET（52％）。几乎一半的患者在问卷中发现了局限性，其中9名（14％）患者的问卷评分为较差，16名（25％）患者的问卷评分为中等。总的来说,37名(57%)患者对问卷持积极态度。大约四分之一的患者认为问卷不适合所有年龄段，错过了他们的一些抱怨，不能代表他们的整体HR-QoL关于他们的NET的治疗，太肤浅。当前经过验证的EORTCQLQ-C30和EORTCQLQ-G.I.NET21问卷可能在问题设计和患者最终满意度报告方面存在一些局限性。大规模,关于NETs的HR-QoL评估需要高质量的前瞻性研究。
