Twin Research and Human Genetics

Articles

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

Mirjam A. G. Sprangersa1 c1, Jeff A. Sloana2, Ruut Veenhovena3, Charles S. Cleelanda4, Michele Y. Halyarda5, Amy P. Abertnethya6, Frank Baasa7, Andrea M. Barsevicka8, Meike Bartelsa9, Dorret I. Boomsmaa10, Cynthia Chauhana11, Amylou C. Duecka12, Marlene H. Frosta13, Per Halla14, Pål Klepstada15, Nicholas G. Martina16, Christine Miaskowskia17, Miriam Mosinga18, Benjamin Movsasa19, Cornelis J. F. Van Noordena20, Donald L. Patricka21, Nancy L. Pedersena22, Mary E. Ropkaa23, Quiling Shia24, Gen Shinozakia25, Jasvinder A. Singha26, Ping Yanga27 and Ailko H. Zwindermana28

a1 Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. m.a.sprangers@amc.uva.nl

a2 Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United States of America.

a3 Faculty of Social Sciences, Erasmus University Rotter dam, Rotterdam, The Netherlands.

a4 Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of America.

a5 Department of Radiation Oncology, Mayo Clinic, Scottsdale, AZ, United States of America.

a6 Duke Cancer Care Research Program, Duke University Medical Center, Durham, NC, United States of America.

a7 Laboratory of Neurogenetics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

a8 Nursing Research and Education, Fox Chase Cancer Center, Philadelphia, PA, United States of America.

a9 Department of Biological Psychology, VU University, Amsterdam, the Netherlands.

a10 Department of Biological Psychology, VU University, Amsterdam, the Netherlands.

a11 Cancer Advocay, Wichita, KS, United States of America.

a12 Section of Biostatistics, Mayo Clinic, Scottsdale, AZ, United States of America.

a13 Women's Cancer Program, Mayo Clinic, Rochester, MN, United States of America.

a14 Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, Sweden.

a15 Department of Intensive Care Medicine, St Olavs University Hospital, Norwegian University of Technology and Science, Trondheim, Norway.

a16 Queensland Institute of Medical Research, Brisbane, Australia.

a17 School of Nursing, University of California, San Francisco, CA, United States of America.

a18 Queensland Institute of Medical Research, Brisbane, Australia.

a19 Department of Radiation Oncology, Henry Ford Health System, Detroit, MI, United States of America.

a20 Department of Cell Biology and Histology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

a21 Department of Health Services, University of Washington, Seattle, WA, United States of America.

a22 Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, Sweden.

a23 Cancer Prevention and Control Program, Fox Chase Cancer Center, Cheltenham, PA, United States of America.

a24 Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of America.

a25 Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, United States of America.

a26 Minneapolis Veterans Affairs Medical Center and University of Minnesota, Minneapolis, MN and Mayo Clinic College of Medicine, Rochester, MN, United States of America.

a27 Department of Genetic Epidemiology, Mayo Clinic, Rochester, MN, United States of America.

a28 Department of Clinical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

Abstract

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.

(Received April 14 2009)

(Accepted April 29 2009)

Keywords

  • quality of life;
  • self-rated health;
  • pain;
  • fatigue;
  • genetic disposition

Correspondence:

c1 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.

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