Quality of Life Group

In 1980, in response to an expressed need within the EORTC for a coherent policy on Quality of Life (QOL) research, the Quality of Life Group (QLG) was created to advise the EORTC Headquarters and the various cooperative groups on the design, implementation and analysis of QOL studies within selected phase III clinical trials.

Currently, 43 European countries are represented within the Group, as well as Australia, Canada and the United States.

From its inception, the QLG has included a broad range of professionals, including oncologists, radiotherapists, surgeons, psychiatrists, palliative care specialists, psychologists, social workers and research methodologists.

This cultural mix, defined as much in terms of professional background as language and geography, has proven invaluable in shaping the QLG’s approach to QOL assessment.

The goals of the EORTC QLG are threefold:

1. To develop and refine questionnaires for assessing health-related quality of life (HRQL) of patients for use in oncology clinical trials, in other well-designed research studies and in clinical practice
2. To collaborate with EORTC Disease-Oriented Groups (DOG) in implementing HRQL studies within their clinical trial programs
3. To conduct research to better understand the effects of cancer and its treatment on the HRQL of diverse populations of patients with cancer across different cultures.

Read more about the QLG in our dedicated brochure, available here.

The QLG started developing questionnaires back in the 1980s. Since then, the Group has produced over 70 questionnaires for cancer patients and survivors, covering various disease types, treatments, populations, and aspects of the cancer journey.

Development of a questionnaire in accordance with the standard procedure takes many years and requires a major investment of funds, energy, and people. Thanks to the way we work, the QLG is able to give grants to create and validate questionnaires that allow patients to have their voices heard in research, clinical care and drug development.

Our basic principle is that all the EORTC questionnaires are available to academic users for free to be used in research projects and clinical practice. Our questionnaires are used by doctors, nurses, students, and researchers all over the world.

Commercial entities who want to collect data with the EORTC questionnaires need to first get a license for use of the measures and pay a fee. As part of a non-profit organisation, the QLG uses all the fees collected from the pharmaceutical companies and other commercial entities to invest in new projects – development of new questionnaires, updates to existing questionnaires, research connected to validation of measures, etc. You can see the on-going projects funded by the QLG here.

Access to the EORTC Item Library is free for all users who want to consult it and create an item list. The use of item lists follows the same rules as standard questionnaires, namely: it is free for academic users and subject to a license and a fee for commercial users. The license fees generated through the use of item lists help to fund further development of the Item Library platform along with a number of research projects aimed at supporting the use of the Item Library through, e.g., development of new items and guidelines.