title: The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes.
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.
authors.affiliation: Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. m.a.sprangers@amc.uva.nl
authors.forename: Mirjam A G
authors.initials: MA
authors.lastname: Sprangers
authors.forename: Jeff A
authors.initials: JA
authors.lastname: Sloan
authors.forename: Ruut
authors.initials: R
authors.lastname: Veenhoven
authors.forename: Charles S
authors.initials: CS
authors.lastname: Cleeland
authors.forename: Michele Y
authors.initials: MY
authors.lastname: Halyard
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abertnethy
authors.forename: Frank
authors.initials: F
authors.lastname: Baas
authors.forename: Andrea M
authors.initials: AM
authors.lastname: Barsevick
authors.forename: Meike
authors.initials: M
authors.lastname: Bartels
authors.forename: Dorret I
authors.initials: DI
authors.lastname: Boomsma
authors.forename: Cynthia
authors.initials: C
authors.lastname: Chauhan
authors.forename: Amylou C
authors.initials: AC
authors.lastname: Dueck
authors.forename: Marlene H
authors.initials: MH
authors.lastname: Frost
authors.forename: Per
authors.initials: P
authors.lastname: Hall
authors.forename: Pål
authors.initials: P
authors.lastname: Klepstad
authors.forename: Nicholas G
authors.initials: NG
authors.lastname: Martin
authors.forename: Christine
authors.initials: C
authors.lastname: Miaskowski
authors.forename: Miriam
authors.initials: M
authors.lastname: Mosing
authors.forename: Benjamin
authors.initials: B
authors.lastname: Movsas
authors.forename: Cornelis J F
authors.initials: CJ
authors.lastname: Van Noorden
authors.forename: Donald L
authors.initials: DL
authors.lastname: Patrick
authors.forename: Nancy L
authors.initials: NL
authors.lastname: Pedersen
authors.forename: Mary E
authors.initials: ME
authors.lastname: Ropka
authors.forename: Quiling
authors.initials: Q
authors.lastname: Shi
authors.forename: Gen
authors.initials: G
authors.lastname: Shinozaki
authors.forename: Jasvinder A
authors.initials: JA
authors.lastname: Singh
authors.forename: Ping
authors.initials: P
authors.lastname: Yang
authors.forename: Ailko H
authors.initials: AH
authors.lastname: Zwinderman
mesh_terms: D020022:Genetic Predisposition to Disease / Q000523:psychology*; D014644:Genetic Variation; D006304:Health Status; D006801:Humans; D011788:Quality of Life / Q000523:psychology*; D012107:Research Design