Patients and Doctors Rank Rare Cancer Care Needs Differently in EORTC Survey

Patients with solid rare cancers and the healthcare professionals who treat them agree that communication, information and satisfaction with care matter — but they prioritise those aspects very differently, according to a quantitative analysis from the EORTC Quality of Life Group’s QoL Rare Cancer study, published in BMC Cancer on 27 October 2026 as an open access research article.

The study set out to examine how relevant existing EORTC questionnaires covering healthcare factors — communication, information, and satisfaction with care — are from the perspectives of both solid rare cancer patients and healthcare professionals. These patients are known to face diagnostic delays, limited access to treatment, and fragmentation in their care, making the measurement of their healthcare experience a recognised challenge.

A total of 142 patients and 78 healthcare professionals took part. Participants completed three questionnaires on a 4-point Likert scale for relevance: the EORTC QLQ-COMU26 on communication, the EORTC QLQ-INFO25 on information, and the EORTC PATSAT-C33 on satisfaction with care. Each participant also indicated the 10 most relevant items across all three questionnaires. Descriptive statistics were reported for the overall cohort and for the European Reference Network for Solid Rare Tumours (EURACAN) domains, and exploratory comparisons by disease and treatment type used chi-square or Fisher’s exact tests where appropriate.

Among patients, the items rated “very relevant” most often were mutual trust, selected by 76 percent of respondents from the QLQ-COMU26; information about whether they felt their disease was under control, chosen by 75 percent from the QLQ-INFO25; and the attention doctors gave to an individual patient’s physical symptoms, rated very relevant by 67 percent from the PATSAT-C33. These results highlight that patients placed particular weight on trust in their clinicians and on reassurance about the state of their disease.

Healthcare professionals showed a different pattern. The items they most frequently rated “very relevant” were the use of comprehensible language, chosen by 68 percent from the QLQ-COMU26; information regarding the possible side-effects of treatment, selected by 86 percent from the QLQ-INFO25; and information given on medical tests and treatment, rated very relevant by 68 percent from the PATSAT-C33.

When participants were asked to pick the 10 most relevant items across all questionnaires, the most frequently chosen question differed again between the groups. For patients, the most common selection was information about the diagnosis of their disease, chosen by 70 of 142 patients, or 49 percent. For healthcare professionals, the most frequent choice was information about the medical treatment, selected by 41 of 78 professionals, or 51 percent. The authors note that these differing prioritisation patterns emerged even though both groups were drawing on the same three instruments.

The study’s conclusions state that the EORTC questionnaires capture relevant aspects of the healthcare experience in solid rare cancer, while underscoring the divergence between patient and professional priorities. The authors also point to available qualitative data capturing more in-depth needs, which they say will inform future developments in areas the current questionnaires do not cover. They suggest that developing a concise and tailored instrument for measuring patients’ healthcare experiences could enhance clinical utility and capture what is truly relevant to patients.

The analysis is described as quantitative, drawing on the EORTC QLG QoL Rare Cancer study, and the comparisons by disease and treatment type were explicitly exploratory. The published article is an early-release version, shared to provide faster access to peer-reviewed, accepted research; it is citable and carries a permanent DOI, but is subject to further edits before the final Version of Record replaces it.

The study’s own conclusion frames the next step: using the accompanying qualitative data to address gaps in the current questionnaires, and building a shorter, tailored tool that reflects what patients themselves consider most relevant in their care.

Subject of Research: Patient and healthcare professional ratings of the relevance of EORTC quality of life questionnaires on communication, information and satisfaction with care in solid rare cancers.

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

Article References: Padilla, C. S., Bergerot, C. D., Holthuis, E. I., Dejaco, D., Amarin, R., Eichler, M., Kelany, M. R., Vorbach, S. M., Dimino, A., Piccinelli, M. L., Milanetto, A. C., Morgan, J. D., Kimpel, O., Burgers, J. A., Monale, M. B. D., Tesselaar, M. E. T., van der Graaf, W. T. A., Husson, O., on behalf of the EORTC QoL Rare Cancer Study Consortium, … Ouyang, Y. (2026). The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study. BMC Cancer. https://doi.org/10.1186/s12885-026-17156-y

Image Credits: AI Generated

DOI: 10.1186/s12885-026-17156-y

Keywords: rare cancers, EORTC, quality of life, patient experience, communication, satisfaction with care, healthcare professionals, questionnaires, EURACAN, BMC Cancer, healthcare, experience