The international and interdisciplinary GeneQoL Consortium has been established to investigate the genetic disposition of patient-reported quality-of-life outcomes.
Patient-Reported Quality-of-Life Outcomes
The objective of disease-based quality-of-life research is to gain insight into the impact of disease and treatment on patient-reported outcomes and, thus, to enhance patients' well-being. Patient-reported quality of life refers to the physical, functional, and psychosocial consequences of disease and treatment as experienced by patients themselves. Thus, by definition, it is the subjective experience reflecting the patients' point of view.
Genetic Disposition of Quality-of-Life Outcomes
Patient-reported quality of life is not only affected by disease and treatment. There is emerging evidence for a genetic basis of patient-reported quality of life. The findings from the few studies performed so far are sufficiently compelling to justify further exploration of the relationships between genetic variants and patient-reported quality-of-life endpoints.
The Geneqol Consortium
Delineating the genetic disposition of patient-reported quality-of-life endpoints is complex, given the potential number of genes, the interaction between these genes, the interaction between genes and environmental (e.g., life style) factors, and the number of quality-of-life variables that may be involved. In pursuing the delineation of the relationship between genes and quality of life, both genetic and quality-of-life research is hindered by a mono-disciplinary approach. Few genetic researchers are working with patient-reported quality-of-life endpoints, and similarly few quality-of-life researchers are engaged in genetic research. It is of paramount importance to join forces among the disparate disciplines. Therefore, in 2009, we have established the international and interdisciplinary Consortium for Genetics and Quality of Life Research, the GeneQol Consortium in short. The GeneQol Consortium is a Mayo Clinic (US) and University of Amsterdam(Netherlands) initiative by Jeff A. Sloan and Mirjam A.G. Sprangers. The Geneqol Consortium is intended to provide the requisite foundation and research culture to stimulate the development of this field.
Objective of the Geneqol Consortium
The overall objective is to establish strong collaborative and interdisciplinary relationships to conduct clinically relevant research to identify and investigate potential biological mechanisms, genes and genetic variants involved in quality of life.
The GeneQol Consortium aims to facilitate such investigations by supporting communication among members and with others outside the Consortium, and thus enabling networking and access to knowledge, skills, and ideas. The availability of large-scale data sets of general and disease populations that include both genetic and quality-of-life variables is key to furthering this field. The Consortium thus aims to stimulate international and interdisciplinary collaboration to enable the combined collection of genetic and quality-of-life data and the pooling of such data sets in general and disease populations.
Our vision for the future is that emerging insight into the genetic basis of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. Knowledge of the biological pathways through which various genetic predispositions propel people toward negative or away from positive health experiences will ultimately transform health care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target preventive strategies and/or specific support, such as interventions inducing lifestyle and behavioural changes, psychological counseling or therapy, and/or pharmacological treatment. Results of this work will thus enable health care providers to screen for patients who are likely to experience symptoms and quality-of-life deficits from disease and its treatments. We hope that as a consequence, clinicians will be able to intervene prophylactically, monitor patient well-being, improve treatment decision-making, and improve outcomes encompassing survival, quality of life, and satisfaction with care. Ultimately, quality of life can then become an integral component in the genetic profile. To cite Sloan and Zhao (Current Problems in Cancer, 2006; 30: 255-260), “Doctors will eventually use genetic patterns for several tasks: to tell whether a cancer will spread, to predict how various therapies such as specific drugs or radiation will work, and perhaps even to see how someone's QOL will be affected.”
New Members are Welcome
We actively welcome new, contributing members who are willing to identify relevant studies, obtain access to existing data sets of patients or general populations, volunteer for tasks, or forward new and useful ideas and suggestions. Such combined efforts are needed to further research into the relatively novel question about the genetic disposition of quality of life.