The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study
Year: 2026
Type: article
Study design: Observational Study
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.
Source: BMC Cancer
Authors: Catarina S. Padilla, Cristiane D. Bergerot, Emily I. Holthuis, Daniel Dejaco, Rula Amarin, Martin Eichler, Mohammed R. Kelany, Samuel M. Vorbach, Alessandra Dimino, Mattia Luca Piccinelli, Anna Caterina Milanetto, Jack D. Morgan, Otilia Kimpel, Jacobus A. Burgers, Michela Buglione di Monale, Margot E. T. Tesselaar, Winette T. A. van der Graaf, Olga Husson, Oscar Brouwer, Christianne Lok, Winan van Houdt, Baukelien van Triest, Ellen Kapiteijn, Dirk Grünhagen, Stefanie Hakkesteegt, Martijn van Oude Voshaar, Eva Madsen, Daphne Dumoulin, Freek Brandts, Max K. T. den Holder, Mark ter Laan, Celine Neutel, Martinus P. G. Broen, Benedikt Hofauer, Amal Al-Omari, Haneen Abaza, Ninna Aggerholm Pedersen, Gloria Marquina, Antonio Casado, Kyveli Angelou, Dimitrios Haidopoulos, Gregory Kaltsas, Marina Tsoli, Friedegund Meier, Max Kemper, Bernd Kasper, Martin Fassnacht, Barbara Altieri, Helen Morement, Kathy Oliver, John Ramage, Samantha Sodergren, Daniel Aze, Louis Fox, Mieke van Hemelrijck, Ailbhe Lawlor, Saoirse Dolly, Arie Parnham, Shira Baram, Ana Misir Krpan, Rosanna Mancari, Claudio Pasquali, Davide Tomasini, Sara Pedretti, Nuzhat Noreen, Silvia Gasperoni, Stefano Luzzago, Gennaro Musi, Eric Staals, Tommaso Frisoni, Barbara Dozza, Federica Zuccheri, Giuseppe Lombardi, Martina Corra, Eleonora Bergo, Marta Maccari, Jaroslaw Cwikla, Anna Czechowska, Anna Sikora-Koperska, Iwona Lugowska, Agnieszka Janowska, Lieve Bruggeman, Daphne Hompes, Ilse Degeest, Francoise Borson-Chazot, Farida Smail, Olga Sapožnikov, Boris Itkin, Aida Al Kindy, Zeina Gaby Sawaya, Najla Mohammed AlHashmi, Abdalla Khreis, Denise Robinson, Kubra Akkaya, Emir Celik, Irfan Cicin, Tenaya Wright, Maria Almudena Cascales Garcia, Qiyuan Bao, Zongqing Tu, Weibin Zhang, Yun Ouyang
Institutions: Erasmus MC, The Netherlands Cancer Institute, Erasmus MC Cancer Institute, Innsbruck Medical University, Universität Innsbruck, King Hussein Cancer Center, University Hospital Carl Gustav Carus, Nationales Centrum für Tumorerkrankungen Dresden, Ain Shams University, University of Palermo, European Institute of Oncology, Saint Camillus International University of Health and Medical Sciences, University of Würzburg, Universitätsklinikum Würzburg, Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia, University of Brescia, Leiden University Medical Center, Amsterdam UMC Location University of Amsterdam, Amsterdam University Medical Centers, Radboud University Medical Center, Maastricht University Medical Centre, Maastricht University, Aarhus University, Aarhus University Hospital, Universidad Complutense de Madrid, Hospital Clínico San Carlos, Instituto de Investigación Sanitaria del Hospital Clínico San Carlos, Alexandra Hospital, National and Kapodistrian University of Athens, European Neuroendocrine Tumor Society, Laiko General Hospital of Athens, Technische Universität Dresden, Heidelberg University, University Medical Centre Mannheim, Hampshire Hospitals NHS Foundation Trust, University of Southampton, King's College London, Guy's and St Thomas' NHS Foundation Trust, The Christie Hospital, The Christie NHS Foundation Trust, Instituto Nazionale Tumori Regina Elena, University of Padua, Azienda Ospedaliero-Universitaria Careggi, University of Milan, Istituto Ortopedico Rizzoli, Istituto Oncologico Veneto, The Maria Sklodowska-Curie National Research Institute of Oncology, Universitair Ziekenhuis Leuven, Hospices Civils de Lyon, Hôpital Louis Pradel, Masaryk Memorial Cancer Institute, Sultan Qaboos Comprehensive Cancer Care & Research Center, Sultan Qaboos University, Istinye University, Liv Hospital, Rare Cancers Australia, NHS Lothian, Shanghai Jiao Tong University, Ruijin Hospital
Language: English
Topic: Cancer survivorship and care
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,390
OpenAlex ID: W7223837887