Examining the importance of using a patient’s perception and experience while he or she undergoes new and pioneering clinical trials opens opportunities for discussion of scientific progress and policy in QOL research.
I was excited to attend the third international EORTC Quality of Life and Clinical Trials Conference in Brussels. This conference brought an international faculty together, providing diverse opinions on QOL from across the globe.
Brussels is a beautiful city with a vibrant culture, heritage, and, of course, its famous chocolates. Personally, going to Belgium was also visiting my home country again, with the chance to observe Brussels as a tourist.
Brussels being the economic center of Europe, the conference took off with a debate led by Dr. Marisa Matias from the University of Coimbra in Portugal. Dr. Matias talked about increasing healthcare costs and the use of expensive biological therapies in cancer care, contributing to financial strain borne by patients.
Cost is now considered a “side effect” posing a significant financial burden to patients. The physicians are facing the question about who will be worthy to receive treatment considering age, stage of disease, financial commitment, and the impact on QOL of certain cancer treatments. Although issues in relation to the economic crisis need to be faced, there were questions raised by delegates and policy makers around equity in care.
Improved quality of life, while patients undergo cancer treatment, requires a research translational pathway similar to that used in developing curative cancer therapies, according to professor Charles Cleeland, Department of Symptom Research at the University of Texas. Cleeland highlighted that cancer treatment causes high levels of symptoms that limit treatment tolerability and that patient biology plays a role in determining the risk for developing high symptom burden.
Interestingly, Jeff Sloan from the Mayo Clinic, explored the concept of patient reported outcomes and genetic makeup as a novel approach to assess QOL outcomes. Developing new methods to predict and prevent symptom burden will become part of personalized cancer care. Translational pathways can be used as a strategy to speed up the steps between basic science and patient use for curative treatments.
Assessing QOL in advanced stage trials can inform patients and physicians about risks/benefits and can identify ways to improve cancer treatments. We also know that patients with advanced stage cancers are likely to be older.
Dr. Carol Moinpour, from the Fred Hutchinson Cancer Research Center in Seattle, concluded from health-related quality of life (HRQOL) value studies that aging assessment issues are affecting HRQOL outcomes and the provision of HRQOL data. Practical data collection issues may include comorbidities, polypharmacy, social support, and functional and mental status. However, improved medical literacy and the successful use of self-reporting methods, together with better statistical methods for analyzing datasets with non-random missing data, will lead to more confidence in HRQOL findings.
An important take-home message from the conference is that QOL research is an important aspect of clinical trials in cancer care. In general, there are many underlying issues in using self-reported data, patient-perspectives, and the interpretation of collected subjective data. There is no standard approach to study design, collection, analysis, and interpretation of data in clinical trials. QOL objectives need to reflect realistically on expectations versus experiences.
Participation in this conference enables health professionals to contribute to design and implementation of QOL in clinical trials. Despite the challenges we face, QOL should be our main concern in providing cancer care. Engaging in future international EORTC meetings will keep us up to date on the latest advances and achievements to improve QOL in our cancer patients and will keep discussion and debate open.