Outcomes Assessment in Cancer

Cancer touches the lives of millions worldwide each year. This is reflected not only in well publicised 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 wellbeing of patients and their families. In 2001, the U.S. 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 recognised members are reported in this book, lucidly written and accessible to both researchers and policy makers in academia, government and industry. This volume provides the most penetrating yet practical discussion to date of alternative approaches for comprehensively measuring the burden of cancer and the effectiveness of preventative and therapeutic interventions.

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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 patients 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. OBrien
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 Paper A. The world of outcomes research, yesterday, today, and tomorrow Bert Spilker
Invited Paper B. The ten Ds of health outcomes measurement for the 21st Century Colleen A. McHorney and Karon Cook
Invited Paper C. The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment Gordon Willis, Bryce B. Reeve and Ivan Barofsky
Invited Paper D. 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.