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20 - Cross-cultural use of health-related quality of life assessments in clinical oncology

Published online by Cambridge University Press:  18 December 2009

Neil K. Aaronson Ph.D.
Affiliation:
Head, Division of Psychosocial Research & Epidemiology The Netherlands Cancer Institute, Amsterdam, the Netherlands
Joseph Lipscomb
Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay
Affiliation:
Cancer Research Center, Hawaii
Claire Snyder
Affiliation:
National Cancer Institute, Bethesda, Maryland
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Summary

“Guests are advised to leave their values at the front desk.”

(Notice posted in an Italian hotel lobby)

“Language is your most versatile scientific tool. Learn to use it with precision.”

(Anonymous)

Introduction

Clinical research in oncology is increasingly characterized by multicenter efforts on an international scale. This has the advantage of improving the efficiency with which clinical trials can be conducted via rapid accrual of patients, and also facilitates the registration of new, effective therapies across national boundaries and health care systems. To carry out such international studies, it is essential that the outcomes of interest are standardized across participating countries. This presents few, if any, problems when focusing on biomedical outcomes such as tumor response or survival. However, when employing treatment outcomes of a more subjective nature, including patients' self-reported symptom experience, perceived health status, and quality of life, cross-cultural issues become of paramount importance. It is essential that the questions we ask and the responses we elicit from our patients maintain the same meaning when translated into different languages and applied in different cultural settings. Without such cross-cultural equivalence, the interpretation of patient-based data in multinational clinical investigations is at best problematic, and at worst impossible.

The past 15 years have witnessed major advances in the development of practical, reliable, and valid questionnaires for assessing the health-related quality of life (HRQOL) of patients with cancer.

Type
Chapter
Information
Outcomes Assessment in Cancer
Measures, Methods and Applications
, pp. 406 - 424
Publisher: Cambridge University Press
Print publication year: 2004

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