The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study

Patients with solid rare cancers experience diagnostic delays, limited access to treatment, and fragmentations in care. This study examined the relevance of existing questionnaires of European Organisation of Research and Treatment for Cancer (EORTC) Quality of Life Group (QLG) focusing on healthcare factors (communication, information, and satisfaction with care) from the perspectives of solid rare cancer patients and healthcare professionals (HCPs). This is a quantitative analysis from the EORTC QLG QoL Rare Cancer study. Participants completed three questionnaires on a 4-point Likert scale for relevance (EORTC QLQ-COMU26, EORTC QLQ-INFO25, and EORTC PATSAT-C33) and indicated the 10 most relevant items across all questionnaires. Descriptive statistics were performed for the overall cohort and European Reference Network for Solid Rare Tumours (EURACAN) domains. Exploratory comparisons by disease and treatment type used chi-square or Fisher’s exact tests, as appropriate. A total of 142 patients and 78 HCPs were included. Patients rated questions as “very relevant” for mutual trust (76%) (EORTC QLQ-COMU26), information whether feeling their disease is under control (75%) (EORTC QLQ-INFO25), and the attention doctors gave to individual patient’s physical symptoms (67%) (EORTC PATSAT-C33). For HCPs, questions regarding usage of comprehensible language (68%) (EORTC QLQ-COMU26), information regarding the possible side-effects of treatment (86%) (EORTC QLQ-INFO25), and information given on medical tests and treatment (68%) (EORTC PATSAT-C33) were “very relevant”. The most frequent question in the top 10 most relevant items for all questionnaires was information about the diagnosis of their disease (patients, n = 70; 49%), and information about the medical treatment (HCPs, n = 41; 51%). EORTC questionnaires capture relevant healthcare experience aspects for solid rare cancer, though patients and HCPs showed different prioritisation patterns. Available qualitative data capturing more in-depth needs will inform future developments for lacking areas. Developing a concise and tailored instrument for measuring patients’ healthcare experiences could enhance clinical utility and capture what is truly relevant.

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Journal
BMC Cancer
Published
2026-10-27
DOI
https://doi.org/10.1186/s12885-026-17156-y
Primary Topic
Cancer survivorship and care
Type
article
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article

The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study

Helen Morement, Samuel Moritz Vorbach, Christianne A. R. Lok, Freek Brandts et al.
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BMC Cancer
Cancer survivorship and care
article

The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study

Helen Morement, Samuel Moritz Vorbach, Christianne A. R. Lok, Freek Brandts, Mieke Van Hemelrijck, M Corrà, Sara Pedretti, Margot E. T. Tesselaar, Eva V. E. Madsen, Kathy Rose Oliver, Claudio Pasquali, Haneen Abaza, Martin Faßnacht, Davide Tomasini, Daniel Dejaco, Daniel Aze, Cristiane Decat Bergerot, Barbara Dozza, Shira Baram, Oscar Roberto Brouwer, Dimitrios A. Haidopoulos, Baukelien van Triest, Martijn A. H. Oude Voshaar, Kyveli Angelou, Ellen Kapiteijn, Samantha Claire Sodergren, Barbara Altieri, Maria Almudena Cascales Garcia, Tommaso Frisoni, Zeina Sawaya, Jack D. Morgan, Martinus P. G. Broen, Gennaro Musi, John Keith Ramage, Mohammed Reda Kelany, Daphne W. Dumoulin, Saoirse Olivia Dolly, Rula Amarin, Ailbhe Lawlor, Max Kemper, Federica Zuccheri, Winette T.A. van der Graaf, Martin Eichler, Françoise Borson‐Chazot, Otilia Kimpel, İrfan Çiçin, Olga Husson, Stefanie N. Hakkesteegt, Arie Stewart Parnham, Eleonora Bergo, Daphne Hompes, Rosanna Mancari, Emily I. Holthuis, Agnieszka Janowska, Bernd Kasper, Dirk Jan Grünhagen, Mattia Luca Piccinelli, Alessandra Dimino, Stefano Luzzago, Amal Al‐Omari, Catarina S. Padilla, Anna Caterina Milanetto, Boris Itkin, Louis Fox, Gloria Marquina, Mark ter Laan, Jarosław Ćwikła, Jacobus A. Burgers, Silvia Gasperoni, Iwona Ługowska, Marta Maccari, Olga Sapoznikov, Anna Sikora-Koperska, Emir Çelik, Nuzhat Noreen, Friedegund Meier, Kübra Akkaya, Benedikt Hofauer, Denise Robinson, Qiyuan Bao, Aida Al Kindy, Antonio Casado, Winan van Houdt, Michela Buglione di Monale, Tenaya Wright, Ilse Degeest, Giuseppe Lombardi, Najla Mohammed AlHashmi, Marina Tsoli, Gregory Kaltsas, Max K. T. den Holder, Anna Czechowska, Farida Smail, Abdalla Khreis, Ana Misir Krpan, Eric Staals, Lieve Bruggeman, Zongqing Tu, Celine Neutel, Ninna Aggerholm Pedersen
article en

Abstract

Patients with solid rare cancers experience diagnostic delays, limited access to treatment, and fragmentations in care. This study examined the relevance of existing questionnaires of European Organisation of Research and Treatment for Cancer (EORTC) Quality of Life Group (QLG) focusing on healthcare factors (communication, information, and satisfaction with care) from the perspectives of solid rare cancer patients and healthcare professionals (HCPs). This is a quantitative analysis from the EORTC QLG QoL Rare Cancer study. Participants completed three questionnaires on a 4-point Likert scale for relevance (EORTC QLQ-COMU26, EORTC QLQ-INFO25, and EORTC PATSAT-C33) and indicated the 10 most relevant items across all questionnaires. Descriptive statistics were performed for the overall cohort and European Reference Network for Solid Rare Tumours (EURACAN) domains. Exploratory comparisons by disease and treatment type used chi-square or Fisher’s exact tests, as appropriate. A total of 142 patients and 78 HCPs were included. Patients rated questions as “very relevant” for mutual trust (76%) (EORTC QLQ-COMU26), information whether feeling their disease is under control (75%) (EORTC QLQ-INFO25), and the attention doctors gave to individual patient’s physical symptoms (67%) (EORTC PATSAT-C33). For HCPs, questions regarding usage of comprehensible language (68%) (EORTC QLQ-COMU26), information regarding the possible side-effects of treatment (86%) (EORTC QLQ-INFO25), and information given on medical tests and treatment (68%) (EORTC PATSAT-C33) were “very relevant”. The most frequent question in the top 10 most relevant items for all questionnaires was information about the diagnosis of their disease (patients, n = 70; 49%), and information about the medical treatment (HCPs, n = 41; 51%). EORTC questionnaires capture relevant healthcare experience aspects for solid rare cancer, though patients and HCPs showed different prioritisation patterns. Available qualitative data capturing more in-depth needs will inform future developments for lacking areas. Developing a concise and tailored instrument for measuring patients’ healthcare experiences could enhance clinical utility and capture what is truly relevant.

BMC Cancer
Ain Shams University (EG), Universidad Complutense de Madrid (ES), NHS Lothian (GB), University of Padua (IT), Innsbruck Medical University (AT), Radboud University Nijmegen (NL), Shanghai Jiao Tong University (CN), King's College London (GB), Universität Innsbruck (AT), Guy's and St Thomas' NHS Foundation Trust (GB), National and Kapodistrian University of Athens (GR), Heidelberg University (DE), University of Würzburg (DE), King Hussein Cancer Center (JO), Leiden University Medical Center (NL), Maastricht University Medical Centre (NL), Universitair Ziekenhuis Leuven (BE), Ruijin Hospital (CN), Erasmus MC (NL), Aarhus University Hospital (DK), Amsterdam UMC Location University of Amsterdam (NL), Radboud University Medical Center (NL), The Netherlands Cancer Institute (NL), Hospital Clínico San Carlos (ES), Hampshire Hospitals NHS Foundation Trust (GB), European Neuroendocrine Tumor Society (DE), Saint Camillus International University of Health and Medical Sciences (IT), Instituto de Investigación Sanitaria del Hospital Clínico San Carlos (ES), Hospices Civils de Lyon (FR), Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia (IT), Istituto Oncologico Veneto (IT), Alexandra Hospital (GR), Laiko General Hospital of Athens (GR), Masaryk Memorial Cancer Institute (CZ), Azienda Ospedaliero-Universitaria Careggi (IT), University of Computer Sciences and Economics in Olsztyn (PL), Rare Cancers Australia (AU), Istinye University (TR), Istituto Ortopedico Rizzoli (IT), Universitätsklinikum Würzburg (DE), The Christie Hospital (GB), The Christie NHS Foundation Trust (GB), Hôpital Louis Pradel (FR), Erasmus MC Cancer Institute (NL), The Maria Sklodowska-Curie National Research Institute of Oncology (PL), Amsterdam University Medical Centers (NL), Liv Hospital (TR), University Medical Centre Mannheim (DE), University Hospital Carl Gustav Carus (DE), University of Southampton (GB), Instituto Nazionale Tumori Regina Elena (IT), Nationales Centrum für Tumorerkrankungen Dresden (DE), Sultan Qaboos Comprehensive Cancer Care & Research Center (OM), Sultan Qaboos University (OM), European Institute of Oncology (IT), Technische Universität Dresden (DE), University of Brescia (IT), University of Palermo (IT), KU Leuven (BE)
European Organisation for Research and Treatment of Cancer
Good health and well-being
Openalex Percentile: Top 16%
Cancer survivorship and care
DOIOpen Access PDFOpenAlex
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