New EORTC questionnaire sets a global standard for measuring quality of life in cancer survivors

Cancer survivorship is one of the fastest-growing areas of oncology, yet understanding life after cancer remains a challenge. A major international study¹ led by the EORTC Quality of Life Group (QLG) has validated the EORTC QLQ-SURV100, a comprehensive questionnaire designed to assess the health-related quality of life of cancer survivors across different cancer types, countries and cultures.

Published in the European Journal of Cancer, this study by Louis Fox et al. involved 1,480 cancer survivors from 46 centres in 21 countries, and demonstrated that the questionnaire provides a reliable and valid way to capture the physical, mental and social impact on life after cancer.

Advances in cancer detection and treatment mean that more people are living beyond cancer than ever before. However, many survivors continue to face long-term physical, psychological and social challenges that are not fully captured by questionnaires designed for patients undergoing active treatment.

Developed through extensive international collaboration to address this gap, the QLQ-SURV100 was created specifically for disease-free cancer survivors. It captures a broad range of survivorship issues, from fatigue, pain and emotional well-being to social relationships, daily functioning and positive life changes following cancer, such as increased appreciation of life, personal growth and strengthened relationships.

“With cancer survivorship becoming an increasingly important part of the cancer continuum, we need tools that truly reflect survivors’ experiences,” said Louis Fox, lead author of the paper. “The QLQ-SURV100 was developed together with survivors and healthcare professionals to ensure that the issues that matter most after treatment are measured in a meaningful and culturally relevant way.”

The questionnaire builds on years of work by the EORTC Quality of Life Group to ensure that the patient perspective is captured alongside traditional clinical outcomes. This validation study showed strong psychometric performance across multiple languages, cultures and cancer types, supporting the questionnaire’s use in international research and clinical practice. By systematically capturing survivors’ experiences after treatment, the QLQ-SURV100 can help researchers and healthcare professionals better understand, monitor and address survivors’ long-term needs. The questionnaire was also able to distinguish between survivor groups according to factors such as treatment history, age, sex and comorbidities.

“This validation marks a major achievement for the EORTC Quality of Life Group and for the global survivorship community. For the first time, we have a comprehensive questionnaire that captures the wide spectrum of challenges and positive experiences reported by cancer survivors across different countries, cultures and cancer types,” said Prof. Lonneke van de Poll-Franse, one of the two principal investigators of the study. “The QLQ-SURV100 provides an important foundation for advancing survivorship care and ensuring that quality of life remains a priority long after treatment ends.”

As the number of cancer survivors continues to grow worldwide, the need for survivor-centred research and care is becoming increasingly important. The authors believe the QLQ-SURV100 can support survivorship research, long-term follow-up studies and routine care by providing a robust and standardised way to measure and understand survivors’ experiences.

“As more people live longer after cancer, understanding and improving their quality of life becomes just as important as understanding survival,” said Dr Jaap Reijneveld, Chair of the EORTC Quality of Life Group. “The QLQ-SURV100 gives researchers and healthcare professionals a powerful new tool to ensure that survivors’ voices are heard. Furthermore, by building on the foundations of the EORTC QLQ-C30, the survivorship module supports seamless quality of life assessment across the patients’ entire cancer journey, from cancer diagnosis, treatment through long-term survivorship.”

The QLQ-SURV100 is designed for adult cancer survivors who have completed treatment and have no current evidence of disease. The EORTC Quality of Life Group is continuing to develop complementary survivorship measures for specific cancer populations, helping to create a comprehensive framework for assessing quality of life across the entire cancer continuum.

¹ Louis Fox, Marieke van Leeuwen, Jennifer M. Jones et al., International phase IV field study to validate the European Organisation for Research and Treatment of Cancer questionnaire for assessing the health-related quality of life of cancer survivors: The EORTC QLQ-SURV100, European Journal of Cancer, Volume 245, 2026, 116959, ISSN 0959-8049, https://doi.org/10.1016/j.ejca.2026.116959.

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 Quality of Life Group Communications)
caroline.hance@eortc.org