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JNCI Monographs 2004 2004(33):155-167; doi:10.1093/jncimonographs/lgh017
© 2004 by Oxford University Press
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2004 © Oxford University Press

Article

Taking Stock of Health-Related Quality-of-Life Measurement in Oncology Practice in the United States

Molla S. Donaldson

Correspondence to: Molla S. Donaldson, Dr. P. H., Senior Scientist for Quality of Care Research and Policy, Outcomes Research Branch, National Cancer Institute, National Institutes of Health, 6130 Executive Blvd., Rm. 4028, Bethesda, MD 20892 (e-mail: molla.donaldson{at}nih.gov).

This article focuses on the routine use of patient-reported outcomes measures in oncology clinical practice to monitor patient progress and inform decision making; and in particular, on measuring patient-reported health-related quality of life (HRQOL). The article summarizes the current literature on the acceptability to patients and clinicians of HRQOL measurement and on the effectiveness of feedback to clinicians about their patients' concerns and quality of life. It also describes the experiences recounted by clinicians and researchers who have been implementing such efforts and concludes that in the United States, little HRQOL measurement occurs in oncology practice. That is, much methodological development has occurred, but many challenges to its widespread adoption exist. These challenges include limitations in knowledge about how to apply outcomes instruments, and clinician, patient-related, and health system issues. That effort deserves significant attention now. The way forward, however, does not lie simply in adding HRQOL measurement to other tasks that are part of everyday practice. Rather, attention to principles of effective dissemination and new information infrastructures and technologies, combined with redesign of care, should embed the routine use of patient-reported outcomes in the care process to provide timely response to patients' needs for information and services.



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