In Memoriam: Neil Aaronson, founding member of the EORTC Quality of Life Group

The entire European Organisation for Research and Treatment of Cancer (EORTC) community is deeply saddened by the passing of Prof. Neil Aaronson, whose pioneering work transformed the way patients’ experiences, functioning, and wellbeing are measured and understood in cancer research. Through his vision, scientific leadership, and commitment to methodological excellence, he helped establish health-related quality of life as a fundamental component of oncology research, leaving a legacy that continues to benefit patients across all areas of cancer care.

Within the EORTC Quality of Life Group (QLG), Neil was one of the founding members and a driving force behind many of its most influential achievements. For more than four decades, he helped shape the development of patient-centred cancer research and played a defining role in building an international scientific community dedicated to ensuring that the patient’s perspective is heard, measured, and valued.

“Neil Aaronson truly stood at the basis of our success as one of the most influential groups in the field of quality of life. He served as one of the first chairs back in the nineties, and also after his term, he never held back his opinion and I valued him very much for that,” highlighted Dr Jaap Reijneveld, Chair of the EORTC Quality of Life Group.

Neil joined what was then the EORTC Quality of Life Study Group in 1984 as a young postdoctoral researcher. Working initially between Amsterdam and the EORTC Headquarters in Brussels, he contributed to the effort to professionalise what was at the time a small but ambitious group of researchers seeking to introduce quality of life assessment into cancer clinical trials.

Over the years, he became one of the leading figures in the field and helped transform a pioneering idea into an internationally recognised scientific discipline. Among his many contributions, Neil served as Principal Investigator for the development of the EORTC QLQ-C30, the Group’s flagship questionnaire and one of the world’s most widely used instruments for assessing quality of life in cancer patients. He also played a key role in developing the modular approach to questionnaire measurement that remains a cornerstone of the EORTC quality of life strategy today.

Throughout his career, Neil combined scientific rigour with a deep commitment to improving the lives of patients. His work helped ensure that the patient’s perspective became an essential part of cancer research and clinical decision-making.

“I first met Neil almost 20 years ago, when I asked for his advice on setting up a large quality of life (QoL) registry for cancer survivors. From that first conversation, he became an important mentor to me, also introducing me to the EORTC Quality of Life Group. It feels special that this summer we completed the long-running EORTC project we had worked on together: developing a questionnaire for cancer survivors. Neil was sharp and challenging, but equally warm, generous and fun. In his own words, the QLG had an ‘extended family feel’ and Neil himself contributed enormously to creating that, through the way he brought people together, his humour, and traditions such as ending group dinners by having people stand up and share a sometimes rather ‘dirty’ story or joke with the whole group,” remembered Prof. Lonneke van de Poll-Franse, long-standing member and past Chair of the EORTC Quality of Life Group.

Beyond his scientific achievements, Neil helped build the unique culture that has distinguished the Quality of Life Group since its earliest years. He often spoke warmly about the international, multidisciplinary nature of the Group and the friendships and collaborations it fostered across countries, professions, and generations of researchers.

In a video interview recorded in 2023, Neil reflected on what made the Group so special:

“It kind of has this extended family feel to it. There’s a social element and the professional element. Getting clinicians on board with methodologists, psychologists with surgeons and so forth results in something that is more relevant than it would be if you were only working with one discipline.”

He described the Group’s international and interdisciplinary character, together with the continuity of long-standing members, as qualities that made it “always a joy” to be part of.

Those who worked alongside Neil remember not only his exceptional scientific contributions, but also his generosity as a mentor, collaborator, and friend. He was respected for his thoughtful guidance, intellectual curiosity, and ability to bring people together around a shared commitment to improving outcomes for patients.

“When I made plans for my PhD about quality of life in patients with cancer in 1989, I felt a bit lonely working in a small country with no role models. Joining the EORTC QLG and experiencing the leadership and visions of Neil made an enormous difference, and I was so lucky that he offered to help,” added Prof. Mogens Groenvold, long-standing member and past Chair of the EORTC Quality of Life Group. He continued: “I remember receiving his detailed comments even to the tenth draft of my first papers, explaining in a long accompanying letter how we might be approaching something publishable. We saw this same critical thinking at each QLG meeting and later in his role as an early Editor-in-Chief of the Quality of Life Journal. Neil’s ability to strive for scientific excellence and innovation was extremely inspiring for my career, as it has been for literally hundreds of other colleagues.”

Neil’s influence extends far beyond the questionnaires, methodologies, and publications that bear his mark. Thousands of studies around the world have relied on approaches he helped develop, while countless researchers have benefited from his mentorship and example.

Dr Madeline Pe, Head of the EORTC Quality of Life Department, shared: “There is a famous phrase: ‘if I have seen further, it is by standing on the shoulders of giants.’ Neil was undoubtedly one of those giants. Much of what the EORTC QLG has achieved over the years has been made possible by the foundations in which he was instrumental in building. As we continue to advance the field, many of us are quite standing on his shoulders. His lasting impact will continue to inspire our work at EORTC, and that of the broader research community.”

From the early days of the Quality of Life Group to its position today as a leading international research community, Neil’s influence can be seen in the science he helped advance, the collaborative spirit he helped nurture, and the enduring commitment to ensuring that patients’ experiences remain at the heart of cancer research.

The EORTC Quality of Life Group extends its deepest condolences to Neil’s family, friends, colleagues, and all those whose lives he touched.

His contributions will continue to be felt for many years to come, through the work he pioneered, the people he inspired, and the community he helped build.

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