Giving patients a voice in cancer care: EORTC Quality of Life Group outlines achievements and future priorities

For almost five decades, the EORTC Quality of Life Group (QLG) has helped ensure that cancer research measures not only assess how long patients live, but also how they live. In a new publication in the European Journal of Cancer led by Kelly de Ligt¹, the QLG reflects on its achievements to date and sets out its priorities for the future of patient-reported outcomes (PROs) in oncology.

Since its creation in 1980, the QLG has been a driving force behind the development of tools that allow patients to directly report how cancer and its treatment affect their daily lives, symptoms, functioning and well-being. Today, its core questionnaire, the EORTC QLQ-C30, is the most widely used cancer-specific quality of life questionnaire in the world and has been translated into more than 170 languages.

The publication highlights how the QLG’s work has contributed to making the patient perspective an essential part of clinical cancer research, regulatory, health technology assessment (HTA) and clinician-patient decision-making and routine care. The Group currently counts more than 1,400 members from 43 countries and has developed a portfolio of validated questionnaires used across a wide range of cancer populations and settings.

Advances in cancer treatment have improved survival for many people, but survival is only part of the story. Understanding treatment side effects, disease-related symptoms and their impact on daily functioning and overall well-being is equally important for delivering patient-centred care. PROs provide this information directly from patients.

The QLG has led the establishment of international standards for measuring and interpreting these outcomes and has developed innovative approaches to make assessments more relevant, flexible and useful in both clinical research and practice. These include questionnaires for specific cancer types, survivorship, palliative care, economic evaluations and routine care. The Group has also introduced digital and adaptive tools that can tailor questions to each patient’s responses, making quality of life assessment more personalised and easier to complete.

“For nearly 50 years, the QLG has worked to ensure that the patient’s voice is heard wherever cancer outcomes are evaluated. Quality of life is not an optional outcome. It is a fundamental part of understanding the impact of cancer and its treatment,” said Dr Kelly de Ligt, first author of the publication.

As the QLG approaches its 50th anniversary in 2030, the publication identifies six strategic priorities for the years ahead: innovation and implementation, policy and global outreach, leadership and funding, collaboration, people development, and patient engagement.

Future initiatives will focus on areas such as artificial intelligence, digital health technologies, more inclusive and culturally sensitive measurement, greater patient involvement, and expanding the use of quality of life data in healthcare decision-making and routine cancer care.

“Cancer care is evolving rapidly, and quality of life assessment must evolve with it. Our goal is to ensure that patient-reported outcomes remain scientifically rigorous, clinically meaningful and accessible to all patients, regardless of where they live or who they are,” said Dr Jaap Reijneveld, senior author of the paper and Chair of the EORTC Quality of Life Group.

The authors conclude that the next chapter of the QLG will build on its strong scientific foundation while embracing new technologies and partnerships. Despite changes in cancer care and research, its mission remains unchanged: ensuring that patients’ quality of life is rigorously measured, meaningfully interpreted and consistently valued throughout the cancer care pathway.

¹ KM de Ligt et al. The European Organisation for Research and Treatment of Cancer Quality of Life Group: Past achievements and future priorities in patient-reported outcomes in oncology. European Journal of Cancer, 2026; 245. https://doi.org/10.1016/j.ejca.2026.116961

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).

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