Outcomes Assessment in Cancer

Cancer touches the lives of millions worldwide each year. This is reflected not only in well-publicized mortality statistics but also in the profound - though much more difficult to measure - effects of cancer on the health-related quality of life, economic status, and overall well-being of patients and their families. In 2001, the US National Cancer Institute established the Cancer Outcomes Measurement Working Group to evaluate the state of the science in measuring the important and diverse impacts of this disease on individuals and populations. The findings and recommendations of the working group's 35 internationally recognized members are reported in Outcomes Assessment in Cancer, lucidly written and accessible to both researchers and policy makers in academia, government, and industry. Originally published in 2005, this volume provides a penetrating yet practical discussion of alternative approaches for comprehensively measuring the burden of cancer and the effectiveness of preventive and therapeutic interventions. Features • Comprehensive review and synthesis of cancer outcome measures and methods. • Provides invaluable practical guidance to the cancer research manager or individual investigator about how to select high-quality measures of health-related quality of life and other patient-reported outcomes • Individual chapters display empirical findings in lucidly presented tables, figures, and charts that facilitate side-by-side comparisons of alternative outcome measures and instruments • Material accessible to a wide range of disciplinary backgrounds Edited by: Joseph Lipscomb, National Cancer Institute, Bethesda, Maryland Edited by: Carolyn C. Gotay, Cancer Research Center, Hawaii Edited by: Claire Snyder, National Cancer Institute, Bethesda, Maryland Table of Contents Acknowledgments 1. Introduction Joseph Lipscomb, Carolyn C. Gotay and Claire Snyder 2. Definitions and conceptual models of quality of life Carol Estwing Ferrans 3. Assessing health status and quality of life of cancer patients: the use of general instruments Pennifer Erickson 4. The roles for preference-based measures in support of cancer research and policy David H. Feeny 5. Instruments to measure the specific health impact of surgery, radiation and chemotherapy on cancer patients Michael J. Barry and Janet E. Dancey 6. Quality of life in breast cancer - what have we learned and where do we go from here? Patricia A. Ganz and Pamela J. Goodwin 7. Measuring quality of life in prostate cancer: progress and challenges Mark S. Litwin and James A. Talcott 8. The science of quality of life measurement in lung cancer Craig C. Earle and Jane C. Weeks 9. Treatment for colorectal cancer: impact on health-related quality of life Carol M. Moinpour and Dawn Provenzale 10. Short-term outcomes of chemoprevention, genetic susceptibility testing and screening interventions: what are they? How are they measured? When should they be measured? Jeanne S. Mandelblatt and Joe V. Selby 11. Evaluating quality of life in cancer survivors Brad Zebrack and David Cella 12. Assessing health-related quality of life at end of life Betty R. Ferrell 13. Patient advocate perspective on health-related quality of life issues with prostate cancer survivors James E. Williams 14. Measuring the patient's perspective on the interpersonal aspects of cancer care Charles Darby 15. Needs assessment in cancer David H. Gustafson 16. Assessing the subjective impact of caregiving on informal caregivers of cancer patients Claire Snyder 17. Practical considerations in outcomes assessment for clinical trials Diane L. Fairclough 18. Statistical issues in the application of cancer outcome measures J. A. Sloan 19. The clinical value and meaning of health-related quality-of-life outcomes in oncology David Osoba 20. Cross-cultural use of health-related quality of life assessments in clinical oncology Neil K. Aaronson 21. Item response theory and its applications for cancer outcomes measurement Steven P. Reise 22. Applications of item response theory to improve health outcomes assessment: developing item banks, linking instruments, and computer-adaptive testing Ronald K. Hambleton 23. Subscales and summary scales: issues in health-related outcomes Mark Wilson 24. On the definition and measurement of the economic burden of cancer Mark C. Hornbrook 25. Cost-effectiveness analysis in cancer: toward an iterative framework for integration of evidence from trials and models Bernie J. O'Brien 26. Data for cancer outcomes research: identifying and strengthening the empirical base Carolyn C. Gotay and Joseph Lipscomb 27. Use of health-related quality-of-life measures by industry and regulatory agencies in evaluating oncology therapies Dennis A. Revicki 28. Reflections on COMWG findings and moving to the next phase Carolyn C. Gotay, Joseph Lipscomb and Claire F. Snyder Invited Papers: i. The world of outcomes research: yesterday, today, and tomorrow Bert Spilker ii. The ten D's of health outcomes measurement for the 21st Century Colleen A. McHorney and Karon Cook iii. The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment Gordon Willis, Bryce B. Reeve and Ivan Barofsky ivD. Industry perspective regarding outcomes research in oncology Kati Copley-Merriman, Joseph Jackson, Gregory Boyer, Joseph C. Cappelleri, Robert DeMarinis, Joseph DiCesare, Haim Erder, Jean Paul Gagnon, Lou Garrison, Kathleen Gondek, Kim A. Heithoff, Tom Hughes, David Miller, Margaret Rothman, Nancy Santanello, Richard Willke and Bruce Wong Index.