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A Multinational Pilot Study on Patients' Perceptions of Advanced Neuroendocrine Neoplasms on the EORTC QLQ-C30 and EORTC QLQ-GINET21 Questionnaires
Univ Med Ctr Utrecht, Dept Endocrine Oncol, Utrecht, Netherlands..
Univ Nacl Colombia, Sch Med, Dept Physiol Sci, Bogota, Colombia.;Inst Nacl Cancerol, Bogota, Colombia..
Ctr Eugene Marquis, Dept Med Oncol, Rennes, France..
Ntl Med Res Ctr NN Blokhin, Dept Oncol, Moscow, Russia.;AI Yevdokimov Moscow State Univ, Dept Med & Dent, Moscow, Russia..
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2022 (English)In: Journal of Clinical Medicine, E-ISSN 2077-0383, Vol. 11, no 5, article id 1271Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
MDPI MDPI, 2022. Vol. 11, no 5, article id 1271
Keywords [en]
neuroendocrine tumors, NETs, quality of life, EORTC QLQ-C30, EORTC QLQ-G, I, NET21
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:uu:diva-473197DOI: 10.3390/jcm11051271ISI: 000773377200001PubMedID: 35268362OAI: oai:DiVA.org:uu-473197DiVA, id: diva2:1654264
Available from: 2022-04-26 Created: 2022-04-26 Last updated: 2024-12-03Bibliographically approved

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Öberg, Kjell

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