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Publications

Journal Article Ahead of print

PubMed: 42508271 DOI: 10.1016/j.ejca.2026.116961

The European Organisation for Research and Treatment of Cancer Quality of Life Group: Past achievements and future priorities in patient-reported outcomes in oncology.

Eur J Cancer 245:116961

Authors: Kelly M de Ligt, Lotte van der Weijst, Juan I Arraras, Anne Bredart, Martin Eichler, Johannes M Giesinger, Olga Husson, Bernhard Holzner, Dagmara Kuliś, Simone Oerlemans, Alizé Rogge, Madeline Pe, Samantha Sodergren, Mieke Van Hemelrijck, Jaap C Reijneveld

Affiliations

  • Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
  • European Organisation for Research and Treatment of Cancer (EORTC) Headquarters, Brussels, Belgium.
  • Medical Oncology Department, Hospital Universitario de Navarra, Navarra Institute for Health Research (IdiSNA), Pamplona, Spain.
  • Psycho-Oncology Unit, Institut Curie, Paris, France; Psychology Institute, Psychopathology and Health Process Laboratory, Paris City University, Paris, France.
  • National Center for Tumor Diseases (NCT/UCC), Medical Faculty, Technical University Dresden, Dresden, Germany.
  • Health Outcomes Research Unit, University Hospital of Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria.
  • Department of Medical Oncology, The Netherlands Cancer Institute, Amsterdam, the Netherlands; Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, the Netherlands; Department of Public Health, University Medical Center, Rotterdam, the Netherlands.
  • Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, the Netherlands.
  • Centre for Patient-Centered Outcomes Research, Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.
  • School of Health Sciences, University of Southampton, Southampton, United Kingdom.
  • King's College London, School of Cancer and Pharmaceutical Sciences, Transforming cancer OUtcomes through Research (TOUR), London, United Kingdom.
  • Brain Tumor Center Amsterdam & Department of Neurology, Amsterdam University Medical Center (UMC), Amsterdam, the Netherlands; Department of Neurology, Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, the Netherlands.

Abstract

As the EORTC Quality of Life Group (QLG) approaches its 50th anniversary in 2030, this paper reflects on the group's development and outlines strategic priorities emerging from its January 2026 strategy meeting. Its more than 1400 current members from 43 countries work to support that patient reported outcomes (PROs) are measured rigorously, interpreted meaningfully, and valued consistently throughout the cancer care pathway. Since the introduction of it's core questionnaire (EORTC QLQ-C30) in 1993, EORTC QLG measures have become the most widely used in cancer research worldwide. As the cancer care landscape becomes increasingly complex, we highlight the QLG's ongoing impact and long-term sustainability, with the aim of inspiring other international research and oncology networks. We summarise key developments to date, including the design of its modular measurement strategy, whereby core questionnaires are complemented by additional modules and items from the Item Library. Subsequent initiatives have focused on enhancing the relevance and usability of measures in cancer clinical trials, increasing measurement flexibility to support a broader range of purposes including survivorship, economic evaluation, and routine clinical care, and facilitating outcomes interpretation. Our future work will both sustain the legacy of the past 45 years and shape the next era. We outline ongoing developments within the group and the wider research landscape that underscore the need for a clear future strategy, structured around six pillars: Innovation, research, methodology, and implementation; Policy, stakeholder management, and global outreach; Leadership and funding; Internal collaboration; People development; Patient engagement.

MeSH

Research Design, Quality Of Life, Achievement, Neoplasms, Work, Patient Reported Outcome Measures, Research, Therapeutics