The 22nd annual conference for the International Society of Quality of Life Research (ISOQOL) was recently held in our backyard – right here in Vancouver. The theme of this year’s conference was “The Matrix: Quality of Life in Social Context”. Indeed, many of the presentations looked at quality-of-life using a variety of different lenses than the conventional patient-reported symptom severity and functional status one. Social well-being was one lens with which “quality-of-life” was measured. So too was a concept of personalizing the meaning of quality-of-life to the individual patient.
Clinically, cancer dominated the proceedings, with many of the presentations either focused on a cancer-related diagnosis or taking place in a cancer care setting. This was followed by chronic illnesses, where work spanned a broader spectrum of patient populations and provider-types. Personally, I haven’t bought into the value of collecting patient-reported outcomes (PROs) in this population and the presentations at this year’s conference didn’t do much to convince me otherwise.
Unlike previous years, this year’s conference was far less focused on methods. Yes, there were the expected presentations on instrument development and validation, but this year’s conference was far more focused by translational work. Even some of the more methodological-driven studies – on missing data and response shift, for example – were largely motivated by how PROs could be used in decision making.
This translational work is spurred by the uptake of technology in health care, by both patients and physicians. Several presentations reported on different applications of technology (both hardware and software) to collect and report PROs at the point-of-care. Other work reported on user-centered graphical interface design, and how PROs can be presented to patients in a way that is understandable. This feedback of PROs to patients is a growing interest, in terms of its effects on patients’ behavior, adherence, satisfaction with care.
Similarly, a good number of presentations reported on the use of PROs in clinical decision making. Again, technology seems to be the driving force. Much of the work presented on this broad topic looked at how PROs can be used to better inform clinical decisions, how to measure clinically meaningful changes in PROs, and the development of tools to facilitate all this.
Also rather new to ISOQOL this year were presentations on patient preferences. Dr. Benjamin Craig led a symposium on the policy and clinical benefits of not just measuring patient’s quality-of-life, but their preferences for that quality-of-life as well. This was complimented by a series of podium presentations on measuring health utilities.
Next year’s ISOQOL presentation is in Copenhagen, Denmark. I’m sure the themes that emerged from this year’s conference – broader constructs of quality-of-life, technological applications of PROs, and the measurement of patient preferences – will carry forward next year.