Abstract
Background:
In 2001, the U.S. National Cancer Institute established the Cancer Outcomes Measurement Working Group (COMWG) to evaluate and advance the state of the science in patient-reported outcome (PRO) measurement, with a focus on health-related quality of life (HRQOL). To guide its work, the COMWG adopted the revised Medical Outcomes Trust (MOT) attributes and review criteria for evaluating health status and quality-of-life instruments.
Objective:
With the MOT attributes providing the organizing principle, this paper summarizes and draws inferences from key COMWG findings about the methodological soundness of HRQOL assessment in cancer and steps required to move the field forward.
Results and Conclusions:
Across a range of cancer research applications, especially clinical trials, a variety of generic, general cancer, and cancer site-specific measures of HRQOL have demonstrated adequate reliability, validity, responsiveness, feasibility, and cultural and language adaptation. Methodological challenges remain in the interpretability of HRQOL measures, though substantial progress has been made in defining a “minimum important difference” in scale scores. Much work remains in forging a stronger link between the conceptual model and measurement model in HRQOL instrumentation. Progress along all MOT attributes will likely accelerate with the growing application of modern psychometrics, particularly item response theory modeling, which provides the underpinnings for item banking and computer-adaptive assessment of HRQOL. Future research should emphasize prospectively designed studies to evaluate PRO measures within the MOT framework and in-depth investigations of the role of PRO measures in cancer decision making at all levels.
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Appendix: NCI Cancer Outcomes Measurement Working Group, 2001–2004
Appendix: NCI Cancer Outcomes Measurement Working Group, 2001–2004
Co-Chairs
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Joseph Lipscomb, PhD
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Chief, Outcomes Research Branch, Applied Research Program
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Division of Cancer Control and Population Sciences
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National Cancer Institute
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Carolyn C. Gotay, PhD
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Professor, Cancer Research Center of Hawai’i
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University of Hawai’i
Working Group Initiator
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Claire F. Snyder, PhD
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Expert, Outcomes Research Branch, Applied Research Program
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Division of Cancer Control and Population Sciences
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National Cancer Institute
Working Group Participants
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Neil K. Aaronson, PhD
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Head, Division of Psychosocial Research & Epidemiology
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The Netherlands Cancer Institute, Professor, Faculty of Medicine
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Vrije Universiteit
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Michael J. Barry, MD
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Chief, General Medicine Unit
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Massachusetts General Hospital
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David Cella, PhD
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Professor of Psychiatry and Behavioral Science
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Northwestern University Feinberg School of Medicine
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Director, Center on Outcomes Research and Education
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Evanston Northwestern Healthcare
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Janet E. Dancey, MD
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Senior Clinical Investigator, Investigational Drug Branch, Cancer Therapy Evaluation Program
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Division of Cancer Treatment and Diagnosis
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National Cancer Institute
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Charles Darby
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Social Science Administrator
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Agency for Healthcare Research and Quality
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Craig C. Earle, MD, MSc
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Assistant Professor of Medicine, Harvard Medical School
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Dana-Farber Cancer Institute
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Pennifer Erickson, PhD
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Associate Professor, Departments of Biobehavioral Health and Health Evaluation Sciences
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Pennsylvania State University
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Diane L. Fairclough, DrPH
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Professor, Colorado Health Outcomes Center and
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Department of Preventive Medicine and Biometry
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University of Colorado Health Sciences Center
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David H. Feeny, PhD
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Professor of Pharmacy and Pharmaceutical Sciences
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Departments of Economics and Public Health Sciences
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University of Alberta
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Carol Estwing Ferrans, PhD, RN, FAAN
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Professor, College of Nursing,
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University of Illinois at Chicago
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Betty R. Ferrell, PhD, FAAN
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Research Scientist
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City of Hope Medical Center
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Patricia A. Ganz, MD
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Professor, Schools of Medicine and Public Health
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Director, Division of Cancer Prevention and Control Research
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Jonsson Comprehensive Cancer Center
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University of California, Los Angeles
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Pamela J. Goodwin, MD, MSc, FRCP (C)
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Senior Scientist, Samuel Lunenfeld Research Institute, Mount Sinai Hospital
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Professor of Medicine, University of Toronto
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David H. Gustafson, PhD
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Robert Ratner Professor of Industrial Engineering
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Director, Center of Excellence in Cancer Communications Research
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University of Wisconsin, Madison
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Ronald K. Hambleton, PhD
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Distinguished University Professor, School of Education
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University of Massachusetts
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Mark C. Hornbrook, PhD
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Chief Scientist, Center for Health Research Northwest and Hawaii
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Kaiser Permanente, Northwest Region
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Mark S. Litwin, MD, MPH
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Professor of Urology and Health Services
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Schools of Medicine and Public Health
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University of California, Los Angeles
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Jeanne S. Mandelblatt, MD, MPH
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Director, Cancer & Aging Research
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Lombardi Comprehensive Cancer Center
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Departments of Oncology and Medicine
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Georgetown University Medical Center
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Mary S. McCabe, RN, MA
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Director, Office of Education and Special Initiatives
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National Cancer Institute
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Carol M. Moinpour, PhD
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Behavioral Scientist
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Southwest Oncology Group Statistical Center
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Associate Member, Division of Public Health Sciences
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Fred Hutchinson Cancer Research Center
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Bernie J. O’Brien, PhD
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Professor, Department of Clinical Epidemiology and Biostatistics
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McMaster University
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Associate Director, Centre for Evaluation of Medicines
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St. Joseph’s Healthcare
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David Osoba, BSc, MD, FRCPC
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Quality of Life Consultant
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QOL Consulting, West Vancouver, BC
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Dawn Provenzale, MD, MS
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Associate Professor of Medicine and Director GI Outcomes Research
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Duke University Medical Center
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Steven P. Reise, PhD
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Professor, Department of Psychology
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University of California, Los Angeles
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Dennis A. Revicki, PhD
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Vice President and Director, Center for Health Outcomes Research
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MEDTAP International
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Joe V. Selby, MD, MPH
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Director, Division of Research
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Kaiser Permanente Northern California
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Jeff A. Sloan, PhD
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Lead Statistician, Cancer Center Statistics
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Mayo Clinic Rochester
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James A. Talcott, MD, SM
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Assistant Professor and Director, Center for Medical Outcomes
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Massachusetts General Hospital
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Jane C. Weeks, MD, MSc
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Associate Professor of Medicine
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Chief, Division of Population Science
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Dana-Farber Cancer Institute
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James E. Williams, Jr. (Col. Ret.) USA
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Co-Chairman, Pennsylvania Prostate Cancer Coalition
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Vice President, Intercultural Cancer Council Caucus
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Mark Wilson, PhD
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Professor, Graduate School of Education
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University of California, Berkeley
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Brad Zebrack, PhD, MSW
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Cancer Survivor/Advocate
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NCI Director’s Consumer Liaison Group
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Assistant Professor, School of Social Work
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University of Southern California
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Lipscomb, J., Snyder, C.F. & Gotay, C.C. Cancer outcomes measurement. Qual Life Res 16, 143–164 (2007). https://doi.org/10.1007/s11136-006-9116-x
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DOI: https://doi.org/10.1007/s11136-006-9116-x