Cancer Outcomes Measurement Working Group (COMWG)

The importance of outcomes assessment is increasingly recognized by multiple agencies involved in cancer research. To address the diverse needs of users, it is critical to assess the state of the science of outcomes measurement and identify priorities for future research and practice.

In 2001, NCI created the Cancer Outcomes Measurement Working Group (COMWG) to evaluate existing endpoint measures and instruments and formulate alternative strategies for identifying valid, reliable, sensitive, and feasible clinical and patient-centered endpoint measures for use in quality of cancer care studies. Members worked individually or in pairs on a range of research questions related to the state of the science and recommendations to improve measurement of key patient outcomes in four cancer sites (breast, prostate, colorectal, and lung). These questions included:

• current best practices and recommendations for assessing the following three outcomes across the continuum of care: health-related quality of life; economic burden; and patient satisfaction;
• different perspectives on and uses of the resulting data; and
• statistical, psychometric, and methodological considerations of outcomes measurement.

The COMWG reported their findings to NCI, and the results were published in 2005 by Cambridge University Press in a book entitled Outcomes Assessment in Cancer, which includes the following chapters:

1. Use Of Generic Measures To Assess Health-Related Quality Of Life In Cancer
1. Definitions and Conceptual Models of Quality of Life
   Carol E. Ferrans, PhD, RN
2. Multidimensional Measures for Assessing Health-Related Quality of Life of Persons with Cancer
   Pennifer Erickson, PhD
3. The Role of Preference-Based Measures in Cancer Outcomes Research
   David Feeny, PhD
2. Assessing Health-Related Quality Of Life During Treatment
1. Instruments Designed to Measure the Specific Health Impact of Treatments on Cancer Patients Regardless of Primary Cancer Site
   Michael Barry, MD
   Janet Dancey, MD
2. Health-Related Quality of Life in Breast Cancer
   Patricia A. Ganz, MD
   Pamela Goodwin, MD, MSc
3. Health-Related Quality of Life in Prostate Cancer
   Mark Litwin, MD, MPH
   James Talcott, MD
4. Health-Related Quality of Life in Lung Cancer
   Craig Earle, MD, MSc
   Jane Weeks, MD
5. Health-Related Quality of Life in Colorectal Cancer
   Carol Moinpour, PhD
   Dawn Provenzale, MD, MS
3. Assessing Health-Related Quality Of Life Across The Continuum Of Care
1. Measuring Short-Term Outcomes of Cancer Prevention and Early Detection Activities in Asymptomatic Patients
   Jeanne Mandelblatt, MD, MPH
   Joe V. Selby, MD, MPH
2. Evaluating Quality of Life Assessment in Cancer Survivors
   David Cella, PhD
   Brad Zebrack, PhD
3. Quality of Life at End of Life
   Betty Ferrell, PhD, FAAN
4. Measuring The Experience And Needs Of Cancer Patients And Their Caregivers
1. The Patient's Perspective
   James Williams (Col.,U.S. Army, Ret.)
2. Understanding the Patient's Perspective on the Cancer Care Experience
   Charles Darby
3. Development, Implementation, and Evaluation of Needs Assessments in Cancer
   David Gustafson, PhD
4. Assessing the Subjective Impact on Informal Caregivers of Cancer Patients
   Claire Snyder, MHS
5. Methodological Considerations In Applications To Cancer Outcomes Research
1. Practical Considerations
   Diane Fairclough, DrPH
2. Statistical Issues in the Application of Cancer Outcome Measures
   Jeff Sloan, PhD
3. The Clinical Value and Meaning of Health-Related Quality of Life Outcomes in Oncology
   David Osoba, MD
4. Translation and Cross-Cultural Adaptation and Uses in Different Populations
   Neil Aaronson, PhD
6. Modern Psychometric Theory And Its Application To Cancer
1. Item Response Theory and Cancer Care Related Measures
   Steven Reise, PhD
2. Using Modern Psychometric Theory with Summary Scores and Subscale Scores
   Mark Wilson, PhD
3. Applications of Item Response Theory: Instrument Development, Score Equating, and Detecting Bias
   Ron Hambleton, PhD
7. Assessing the Economic Impact of Cancer
1. From Prevention to Palliation: Defining and Measuring the Full Economic Burden of Cancer
   Mark C. Hornbrook, PhD
2. Cost-Effectiveness Models in Cancer: From Clinical Trials to Real World
   Bernie J. O'Brien, PhD
8. Research and Policy Implications
1. Sources and Mechanisms for Collecting Cancer-Related Outcomes Data
   Carolyn Cook Gotay, PhD
   Joseph Lipscomb, PhD
2. Health-Related Quality of Life Outcomes in Evaluating Oncology Treatments by Industry and Regulatory Agencies
   Dennis Revicki, PhD
3. Measure for Measure -- the Policy Implications
   Mary McCabe, RN, MA
4. The Next Phase
   Carolyn Cook Gotay, PhD
   Joseph Lipscomb, PhD
   Claire Snyder, MHS