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The Establishment of the GENEQOL Consortium to Investigate the Genetic Disposition of Patient-Reported Quality-of-Life Outcomes

Published online by Cambridge University Press:  21 February 2012

Mirjam A. G. Sprangers*
Affiliation:
Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. m.a.sprangers@amc.uva.nl
Jeff A. Sloan
Affiliation:
Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United States of America.
Ruut Veenhoven
Affiliation:
Faculty of Social Sciences, Erasmus University Rotter dam, Rotterdam, The Netherlands.
Charles S. Cleeland
Affiliation:
Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of America.
Michele Y. Halyard
Affiliation:
Department of Radiation Oncology, Mayo Clinic, Scottsdale, AZ, United States of America.
Amy P. Abertnethy
Affiliation:
Duke Cancer Care Research Program, Duke University Medical Center, Durham, NC, United States of America.
Frank Baas
Affiliation:
Laboratory of Neurogenetics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
Andrea M. Barsevick
Affiliation:
Nursing Research and Education, Fox Chase Cancer Center, Philadelphia, PA, United States of America.
Meike Bartels
Affiliation:
Department of Biological Psychology, VU University, Amsterdam, the Netherlands.
Dorret I. Boomsma
Affiliation:
Department of Biological Psychology, VU University, Amsterdam, the Netherlands.
Cynthia Chauhan
Affiliation:
Cancer Advocay, Wichita, KS, United States of America.
Amylou C. Dueck
Affiliation:
Section of Biostatistics, Mayo Clinic, Scottsdale, AZ, United States of America.
Marlene H. Frost
Affiliation:
Women's Cancer Program, Mayo Clinic, Rochester, MN, United States of America.
Per Hall
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, Sweden.
Pål Klepstad
Affiliation:
Department of Intensive Care Medicine, St Olavs University Hospital, Norwegian University of Technology and Science, Trondheim, Norway.
Nicholas G. Martin
Affiliation:
Queensland Institute of Medical Research, Brisbane, Australia.
Christine Miaskowski
Affiliation:
School of Nursing, University of California, San Francisco, CA, United States of America.
Miriam Mosing
Affiliation:
Queensland Institute of Medical Research, Brisbane, Australia.
Benjamin Movsas
Affiliation:
Department of Radiation Oncology, Henry Ford Health System, Detroit, MI, United States of America.
Cornelis J. F. Van Noorden
Affiliation:
Department of Cell Biology and Histology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
Donald L. Patrick
Affiliation:
Department of Health Services, University of Washington, Seattle, WA, United States of America.
Nancy L. Pedersen
Affiliation:
Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, Sweden.
Mary E. Ropka
Affiliation:
Cancer Prevention and Control Program, Fox Chase Cancer Center, Cheltenham, PA, United States of America.
Quiling Shi
Affiliation:
Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of America.
Gen Shinozaki
Affiliation:
Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, United States of America.
Jasvinder A. Singh
Affiliation:
Minneapolis Veterans Affairs Medical Center and University of Minnesota, Minneapolis, MN and Mayo Clinic College of Medicine, Rochester, MN, United States of America.
Ping Yang
Affiliation:
Department of Genetic Epidemiology, Mayo Clinic, Rochester, MN, United States of America.
Ailko H. Zwinderman
Affiliation:
Department of Clinical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
*
*Address for correspondence: Mirjam A. G. Sprangers, Department of Medical Psychology / J3-211, Academic Medical Center, University of Amsterdam, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands.

Abstract

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To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes.

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Copyright © Cambridge University Press 2009
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