EORTC Quality of Life Conference 2025 wraps with strong call for patient-centred innovation in oncology

Barcelona, 14 May 2025 – The 6th EORTC Quality of Life in Cancer Clinical Trials Conference, held on 12 and 13 May, concluded after a dynamic and thought-provoking series of sessions focused on integrating patient perspectives into oncology research, clinical trials, and regulatory decision-making.

Hosted in Barcelona, the conference brought together international experts from academia, clinical practice, regulatory bodies, patient advocacy groups, and industry to explore how Patient-Reported Outcomes (PROs), Patient Experience Data (PED), and Health Technology Assessment (HTA) endpoints can be better aligned to improve the relevance and impact of cancer care.

Key topics included:

• PROs in cancer clinical research: More patients survive cancer, but they also need to survive it well. This makes PROs essential to understand patients’ reality. Jan Geissler, Alexandra Gilbert and Mogens Groenvold emphasised the critical role of PROs in cancer research. Discussions highlighted the importance of integrating PROs into clinical trials to capture patients’ perspectives on treatment impact, enhancing the relevance and quality of oncological studies.
• EORTC and ESMO Special Session: Sjoukje Oosting, Katarzyna Pogoda, Priya Ranganathan and Jan Geissler discussed the European Society for Medical Oncology’s Magnitude of Clinical Benefit Scale (ESMO-MCBS) and its incorporation of health-related quality of life (HRQoL) measures. Case studies illustrated how HRQoL endpoints can influence clinical benefit assessments, underscoring the need for standardised PRO integration in oncology trials.
• Current Developments in EORTC Measurement Tools: This session showcased advancements in EORTC’s measurement instruments, including the QLQ-C30 and its modules, the Item Library, and computer-adaptive testing tools. Presenters, who included Samantha Sodergren, Francesca Martinelli, Claire Piccinin, Hugo Vachon, Johannes Giesinger and Dagmara Kuliś, emphasised the importance of robustly developed, culturally validated questionnaires and innovative tools to personalise HRQoL assessments in cancer research.
• PRO Assessment in Special Cancer Populations: Focusing on underserved groups, this session addressed the unique challenges of assessing HRQoL in children, adolescents and young adults, cognitively impaired individuals, older adults, and those in palliative care. All speakers, David Riedl, Anne-Sophie Darlington, Jaap Reijneveld, Paolo Bossi and Mogens Groenvold advocated for PRO measures to these specific populations, designed in a way that allows capturing diverse patient experiences accurately.
• Clinically Relevant PRO Scores—Methodological Considerations: Through insightful talks from Jammbe Musoro, Johannes Giesinger and Monika Sztankay, this session delved into distinguishing statistically significant changes from clinically meaningful ones in PRO data. Discussions covered interpreting individual patient scores, establishing reference values, and the need for norm data to contextualise HRQoL findings effectively.
• Use of PROs in Regulatory and HTA Decision-Making: Regulatory and HTA experts – Anja Schiel, Juan García Burgos, Kirsten Janke, Jan Liliemark and Sigrid Klaar – explored the integration of PROs into decision-making processes. The session highlighted the growing recognition of patient experience data (PED) in regulatory frameworks and the importance of aligning PRO measurement designs in trials with HTA requirements.
• Statistical Considerations in PRO Use in Clinical Trials: This session welcomed Corneel Coens, Antoine Regnault, Jammbe Musoro and Christina Yap. Presenters addressed statistical methodologies for analysing PRO data, introducing the SISAQOL-IMI initiative and the estimand framework. Case studies from randomised controlled trials, single-arm studies, and phase 1 trials illustrated the application of these approaches to enhance PRO collection and data interpretation.
• PROs in Real-World Evidence Generation and Patient Management: Speakers, who included Michael Brundage, Galina Velikova, August Zabernigg, Lonneke van de Poll-Franse, Bettina Ryll and Erik Briers, discussed the implementation of PROs in routine clinical practice and real-world evidence generation. Topics ranged from early adoption experiences to symptom monitoring, integration into registries, and lessons from pragmatic precision medicine trials, emphasising the value of PROs in patient-centred care.
• Electronic and Digital Outcome Assessments: This session explored the promise and complexity of digital health tools in assessing quality of life. The speakers, Paul O’Donohoe, Bernhard Holzner and Katarzyna Wac, highlighted the need for flexibility, regulatory alignment, and strategies to reduce missing data. Real-world integration of ePROs requires sustainable systems and tested facilitators. Digital endpoints offer new opportunities to enhance clinical outcomes and support patient-centred care.

The event underscored a shared commitment to moving beyond compliance toward true patient centricity in evidence generation and decision-making.

“Quality of life is not just a secondary outcome—it is central to effective cancer treatment,” said Dr Jaap Reijneveld, Chair of the EORTC Quality of Life Group and member of the conference Scientific Committee. “This conference showcased the importance of collaboration across all interest holders involved, and how this can lead to more meaningful, patient-relevant outcomes in oncology.”

As the conference closes, participants leave with a renewed drive to integrate the patient voice more deeply and consistently in clinical and regulatory science. At EORTC, we work to increase cancer survival; but, equally importantly, to improve quality of life of cancer patients and survivors.

For more information about the conference and the speakers, visit: www.eortc.org/qol

The European Organisation for Research and Treatment of Cancer (EORTC) is a non-governmental, non-profit organisation, which unites clinical cancer research experts, throughout Europe, to define better treatments for cancer patients to prolong survival and improve quality of life. Spanning from translational to large, prospective, multi-centre, phase III clinical trials that evaluate new therapies and treatment strategies as well as patient quality of life, its activities are coordinated from EORTC Headquarters, a unique international clinical research infrastructure, based in Brussels, Belgium.

The EORTC Quality of Life Group (QLG) strives to improve health-related quality of life (HRQoL) of cancer patients, through dedicated research and the use of HRQoL measures within cancer clinical trials and clinical practice. HRQoL constitutes an important aspect of cancer research and care: it gives a voice to patients, putting their experience at the forefront. The QLG is part of the European Organisation for Research and Treatment of Cancer (EORTC).
For further information, please visit the QLG website: qol.eortc.org

Caroline Hance (EORTC QLG)
caroline.hance@eortc.org