Cancer and its treatment have a major impact on patients’ lives which can lead to difficulties in fulfilling family roles, the ability to work, or participating in common social activities. Even when successfully treated, cancer may result in long-term physical and psychological consequences. At the EORTC, we recognize that there is not only a need to examine the impact of cancer in terms of longer survival, but also in terms of understanding the general effect of cancer on a patient as a “whole person”, as opposed to simply regarding the patient as a disease that needs to be cured. This type of research is called health related quality of life (HRQOL).
In cancer clinical trials, we measure patients’ symptoms, functioning, and overall well-being using carefully developed self-reported questionnaires known as HRQOL measures. HRQOL is a multi-dimensional construct covering at least several key dimensions such as disease and treatment-related symptoms as well as physical, psychological and social functioning. HRQOL measures have been an integral part of EORTC clinical trials and have been used for over 30 years.
Over 30 years ago, the EORTC assembled a group of experts in the field of quality of life with the aim of developing HRQOL measures that could be used in all cancer clinical trials. This was the EORTC Quality of Life Group, and later a Quality of Life Department was created at EORTC Headquarters to provide administrative, practical, and scientific support for implementing these measures in EORTC trials. Because of these two initiatives, the EORTC has been able to conduct over 170 clinical trials in which HRQOL measures were used. In many of these studies, we were able to inform patients and clinicians about side effects that may be experienced when undergoing novel therapies. Such information can help patients make informed treatment decisions and allow them to be better prepared for the impact of the treatment. We firmly believe empowering patients with such knowledge is an important factor that can help them deal with their disease and its treatment.
The EORTC plans to continue to collect the patient’s perspective on new treatments and thereby help clinicians manage side effects and also help patients understand both the short- and long-term consequences of the cancer and its treatment. In the near future, we hope to be able to start using online HRQOL measures so as to minimize patient burden. It is our hope and expectation that all future trials will routinely collect HRQOL data, and these data will continue to serve as an invaluable source of treatment information for patients in the future.