New EORTC quality of life questionnaire for adolescents and young adults with cancer

An important study by Sam Sodergren et al.¹, detailing the development of a new Health-Related Quality of Life (HRQoL) questionnaire for adolescents and young adults with cancer, was published online in JAMA Network Open in December 2025.

The paper outlines the systematic process used to create and pretest a new EORTC instrument specifically designed to measure the unique quality of life concerns of individuals aged 14–39 years who are living with or beyond a cancer diagnosis.

Adolescents and Young Adults (AYAs) with cancer experience physical, emotional, social, and functional challenges that differ from those of younger children or older adults. Despite this, existing quality of life measures have been largely inadequate in capturing the issues that are relevant and important to AYAs with cancer – limiting clinicians’ and researchers’ ability to fully understand patient needs and to tailor supportive care.

The research team, representing institutions from across the world, undertook a multi-phase development process that included:

• A systematic review of AYA oncology literature and interviews with AYA patients and healthcare professionals;
• Pilot testing to refine question relevance, clarity, and emotional appropriateness;
• Preliminary psychometric evaluation to ensure the measure’s reliability and validity.

“The final instrument provides a structured and sensitive way to assess issues such as fatigue, social participation, emotional well-being, life planning concerns, body image, and treatment side effects, while also capturing challenges that are unique to AYAs during and after cancer treatment – such as the impact of cancer on education and career trajectories, financial circumstances, romantic relationships, and life goals. Importantly, it also reflects positive adaptations reported by many AYAs, including enhanced motivation, resilience, and changes in personal priorities,” highlighted Dr Sam Sodergren, lead author of the paper.

This new questionnaire supplements the existing and commonly used EORTC QLQ-C30 core questionnaire. As a next step, a validation study will be conducted to confirm this new instrument’s validity and reliability through psychometric testing in a large, international patient population.

By offering a patient-centred quality of life tool tailored to AYAs with cancer, after having gone through the full validation process, this work promises to:

• Improve clinical assessment and monitoring of HRQoL in oncology care settings;
• Enhance research outcomes by providing a standardised and validated measure for clinical trials involving AYA populations;
• Support personalised supportive care, enabling health professionals to address issues that matter most to this age group.

More information about this project is available in the related press release issued by the lead author’s university here.

¹ Sodergren SC, Husson O, Janssen S, et al. Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer. JAMA Netw Open. 2025;8(12):e2549071. doi:10.1001/jamanetworkopen.2025.49071

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