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Published in: Quality of Life Research 10/2010

Open Access 01-12-2010

Scientific imperatives, clinical implications, and theoretical underpinnings for the investigation of the relationship between genetic variables and patient-reported quality-of-life outcomes

Authors: Mirjam A. G. Sprangers, Jeff A. Sloan, Andrea Barsevick, Cynthia Chauhan, Amylou C. Dueck, Hein Raat, Quiling Shi, Cornelis J. F. Van Noorden, The GENEQOL Consortium

Published in: Quality of Life Research | Issue 10/2010

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Abstract

Objectives

There is emerging evidence for a genetic basis of patient-reported quality-of-life (QOL) outcomes that can ultimately be incorporated into clinical research and practice. Objectives are (1) to provide arguments for the timeliness of investigating the genetic basis of QOL given the scientific advances in genetics and patient-reported QOL research; (2) to describe the clinical implications of such investigations; (3) to present a theoretical foundation for investigating the genetic underpinnings of QOL; and (4) to describe a series of papers resulting from the GENEQOL Consortium that was established to move this work forward.

Methods

Discussion of scientific advances based on relevant literature.

Results

In genetics, technological advances allow for increases in speed and efficiency and decreases in costs in exploring the genetic underpinnings of disease processes, drug metabolism, treatment response, and survival. In patient-based research, advances yield empirically based and stringent approaches to measurement that are scientifically robust. Insights into the genetic basis of QOL will ultimately allow early identification of patients susceptible to QOL deficits and to target care. The Wilson and Cleary model for patient-reported outcomes was refined by incorporating the genetic underpinnings of QOL.

Conclusions

This series of papers provides a path for QOL and genetics researchers to work together to move this field forward and to unravel the intricate interplay of the genetic underpinnings of patient-reported QOL outcomes. The ultimate result will be a greater understanding of the process relating disease, patient, and doctor that will have the potential to lead to improved survival, QOL, and health services delivery.
Appendix
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Metadata
Title
Scientific imperatives, clinical implications, and theoretical underpinnings for the investigation of the relationship between genetic variables and patient-reported quality-of-life outcomes
Authors
Mirjam A. G. Sprangers
Jeff A. Sloan
Andrea Barsevick
Cynthia Chauhan
Amylou C. Dueck
Hein Raat
Quiling Shi
Cornelis J. F. Van Noorden
The GENEQOL Consortium
Publication date
01-12-2010
Publisher
Springer Netherlands
Published in
Quality of Life Research / Issue 10/2010
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-010-9759-5

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