{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T05:29:06Z","timestamp":1781760546506,"version":"3.54.5"},"reference-count":40,"publisher":"MDPI AG","issue":"5","license":[{"start":{"date-parts":[[2022,2,25]],"date-time":"2022-02-25T00:00:00Z","timestamp":1645747200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>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\u2019 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\u2019 final satisfaction reporting of the questionnaire. Large-scale, high-quality prospective studies are required in HR-QoL assessment regarding NETs.<\/jats:p>","DOI":"10.3390\/jcm11051271","type":"journal-article","created":{"date-parts":[[2022,2,27]],"date-time":"2022-02-27T20:47:17Z","timestamp":1645994837000},"page":"1271","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["A Multinational Pilot Study on Patients\u2019 Perceptions of Advanced Neuroendocrine Neoplasms on the EORTC QLQ-C30 and EORTC QLQ-GINET21 Questionnaires"],"prefix":"10.3390","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6147-9746","authenticated-orcid":false,"given":"Rachel S.","family":"van Leeuwaarde","sequence":"first","affiliation":[{"name":"Department of Endocrine Oncology, University Medical Center Utrecht, 3584 Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ang\u00e9lica M.","family":"Gonz\u00e1lez-Clavijo","sequence":"additional","affiliation":[{"name":"Department of Physiological Sciences, School of Medicine, Universidad Nacional de Colombia, Bogota 111321, Colombia"},{"name":"Instituto Nacional de Cancerolog\u00eda, Bogota 111321, Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc","family":"Pracht","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Centre Eug\u00e8ne Marquis, 35000 Rennes, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Galina","family":"Emelianova","sequence":"additional","affiliation":[{"name":"Department of Oncology, National Medical Research Center N.N. Blokhin, 115191 Moscow, Russia"},{"name":"Department of Medicine and Dentistry, A.I. Yevdokimov Moscow State University, 127473 Moscow, Russia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Winson Y.","family":"Cheung","sequence":"additional","affiliation":[{"name":"Department of Oncology, University of Calgary, Tom Baker Cancer Center, Calgary, AB T2N 4N2, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Thirlwell","sequence":"additional","affiliation":[{"name":"Cancer Institute, University College London, London WC1E 6DD, UK"},{"name":"Department of Medicine and Health, University of Exeter School, Exeter EX4 4PY, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kjell","family":"\u00d6berg","sequence":"additional","affiliation":[{"name":"Department of Endocrine Oncology, Uppsala University Hospital, 75185 Uppsala, Sweden"},{"name":"Department of Medical Sciences, Uppsala University, 75236 Uppsala, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3642-0798","authenticated-orcid":false,"given":"Francesca","family":"Spada","sequence":"additional","affiliation":[{"name":"Division of Gastrointestinal Medical Oncology and Neuroendocrine Tumors, European Institute of Oncology (IEO), Istituto di Ricovero e Cura a Carattere Scientifico, 20141 Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2022,2,25]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1335","DOI":"10.1001\/jamaoncol.2017.0589","article-title":"Trends in the incidence, prevalence, and survival outcomes in patients with neuroendocrine tumors in the United States","volume":"3","author":"Dasari","year":"2017","journal-title":"JAMA Oncol."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"R445","DOI":"10.1530\/ERC-14-0106","article-title":"Hallmarks of gastrointestinal neuroendocrine tumours: Implications for treatment","volume":"21","author":"Walenkamp","year":"2014","journal-title":"Endocr. 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