A Multinational Pilot Study on Patients’ Perceptions of Advanced Neuroendocrine Neoplasms on the EORTC QLQ‐C30 and EORTC QLQ‐GINET21 Questionnaires

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.