CANCER POLICY: RESEARCH AND METHODS Cancer Treatment and Research Steven T. Rosen, M.D., Series Editor Nathanson, L. (ed): Malignant Melanoma: Genetics, Growth Factors, Metastases, and Antigens. 1991. ISBN 0-7923-0895-6. Sugarbaker, P.H. (ed): Management of Gastric Cancer. 1991. ISBN 0-7923-1102-7. Pinedo H.M., Verweij J., Suit, H.D., (eds): Soft Tissue Sarcomas: New Developments in the Multidisciplinary Approach to Treatment. 1991. ISBN 0-7923-1139-6. Ozols, R.F., (ed): Molecular and Clinical Advances in Anticancer Drug Resistance. 1991. ISBN 0-7923-1212-0. Muggia, P.M. (ed): New Drugs, Concepts and Results in Cancer Chemotherapy 1991. ISBN 0-7923-1253-8. Dickson, R.B., Lippman, M.E. (eds): Genes, Oncogenes and Hormones: Advances in Cellular and Molecular Biology of Breast Cancer. 1992. ISBN 0-7923-1748-3. Humphrey, G. Bennett, Schraffordt Koops, H., Molenaar, W.M., Postma, A., (eds): Osteosarcoma in Adolescents and Young Adults: New Developments and Controversies. 1993. ISBN 0-7923-1905-2. Benz, C. C, Liu, E. T. (eds): Oncogenes and Tumor Suppressor Genes in Human Malignancies. 1993. ISBN 0-7923-1960-5. Freireich, E.J., Kantarjian, H., (eds): Leukemia: Advances in Research and Treatment. 1993. ISBN 0-7923-1967-2. Dana, B. W., (ed): Malignant Lymphomas, Including Hodgkin's Disease: Diagnosis, Management, and Special Problems. 1993. ISBN 0-7923-2171-5. Nathanson, L. (ed): Current Research and Clinical Management of Melanoma. 1993. ISBN 0-7923-2152-9. Verweij, J., Pinedo, H. M., Suit, H. D. (eds): Multidisciplinary Treatment of Soft Tissue Sarcomas. 1993. ISBN 0-7923-2183-9. Rosen, S. T., Kuzel, T. M. (eds): Immunoconjugate Therapy of Hematologic Malignancies. 1993. ISBN 0-7923-2270-3. Sugarbaker, P. H. (ed): Hepatobiliary Cancer. 1994. ISBN 0-7923-2501-X.. Rothenberg, M. L. (ed): Gynecologic Oncology: Controversies and New Developments. 1994. ISBN 0-7923-2634-2. Dickson, R. B., Lippman, M. E. (eds.): Mammary Tumorigenesis and Malignant Progression. 1994. ISBN 0-7923-2647-4. Hansen, H. H., (ed): Lung Cancer. Advances in Basic and Clinical Research. 1994. ISBN 0-7923-2835-3. Goldstein, L.J., Ozols, R. F. (eds.): Anticancer Drug Resistance. Advances in Molecular and Clinical Research. 1994. ISBN 0-7923-2836-1. Hong, W.K., Weber, R.S. (eds.): Head and Neck Cancer. Basic and Clinical Aspects. 1994. ISBN 0-7923-3015-3. Thall, P.P. (ed): Recent Advances in Clinical Trial Design and Analysis. 1995. ISBN 0-7923-3235-0. Buckner, C. D. (ed): Technical and Biological Components of Marrow Transplantation. 1995. ISBN 0-7923-3394-2. Winter, J.N. (ed.): Blood Stem Cell Transplantation. 1997. ISBN 0-7923-4260-7. Muggia, P.M. (ed): Concepts, Mechanisms, and New Targets for Chemotherapy. 1995. ISBN 0-7923-3525-2. Klastersky, J. (ed): Infectious Complications of Cancer. 1995. ISBN 0-7923-3598-8. Kurzrock, R., Talpaz, M. (eds): Cytokines: Interleukins and Their Receptors. 1995. ISBN 0-7923-3636-4. Sugarbaker, P. (ed): Peritoneal Carcinomatosis: Drugs and Diseases. 1995. ISBN 0-7923-3726-3. Sugarbaker, P. (ed): Peritoneal Carcinomatosis: Principles of Management. 1995. ISBN 0-7923-3727-1. Dickson, R.B., Lippman, M.E. (eds.): Mammary Tumor Cell Cycle, Differentiation and Metastasis. 1995. ISBN 0-7923-3905-3. Freireich, E.J, Kantarjian, H. (eds.): Molecular Genetics and Therapy of Leukemia. 1995. ISBN 0-7923-3912-6. Cabanillas, F., Rodriguez, M.A. (eds.): Advances in Lymphoma Research. 1996. ISBN 0-7923-3929-0. Miller, A.B. (ed.): Advances in Cancer Screening. 1996. ISBN 0-7923-4019-1. Hait, W.N. (ed.): Drug Resistance. 1996. ISBN 0-7923-4022-1. Pienta, K.J. (ed.): Diagnosis and Treatment of Genitourinary Malignancies. 1996. ISBN 0-7923-4164-3. Arnold, A.J. (ed.): Endocrine Neoplasms. 1997. ISBN 0-7923-4354-9. Pollock, R.E. (ed.): Surgical Oncology. 1997. ISBN 0-7923-9900-5. Verweij, J., Pinedo, H.M., Suit, H.D. (eds.): Soft Tissue Sarcomas: Present Achievements and Future Prospects. 1997. ISBN 0-7923-9913-7. Walterhouse, D.O., Cohn, S. L. (eds.): Diagnostic and Therapeutic Advances in Pediatric Oncology. 1997. ISBN 0-7923-9978-1. Mittal, B.B., Purdy, J.A., Ang, K.K. (eds.): Radiation Therapy. 1998. ISBN 0-7923-9981-1. Foon, K.A., Muss, H.B. (eds.): Biological and Hormonal Therapies of Cancer. 1998. ISBN 0-7923-9997-8. Ozols, R.F. (ed.): Gynecologic Oncology. 1998. ISBN 0-7923-8070-3. Noskin, G. A. (ed.): Management of Infectious Complications in Cancer Patients. 1998. ISBN 0-7923-8150-5 Cancer Policy: Research and Methods edited by Charles L. Bennett, M.D., Ph. D. and Tammy J. Stinson, M.S. Chicago VA Health Care System- Lakeside Division Northwestern University Medical School w KLUWER ACADEMIC PUBLISHERS Boston/Dordrecht/London Distributors for North, Central and South America: Kluwer Academic Publishers 101 Philip Drive Assinippi Park Norwell, Massachusetts 02061 USA Distributors for all other countries: Kluwer Academic Publishers Group Distribution Centre Post Office Box 322 3300 AH Dordrecht, THE NETHERLANDS Library of Congress Cataloging»in-Publication Data Copyright © 1998 by Kluwer Academic Publishers All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, mechanical, photo copying, recording, or otherwise, without the prior written permission of the publisher, Kluwer Academic Publishers, 101 Philip Drive, Assinippi Park, Norwell, Massachusetts 02061 Printed on acid-free paper. Printed in the United States of America V Contents List of Contributors vii Foreward xi Quality of Life Research: Clinical Applications Jennifer L. Reifel and Patricia A. Ganz 1 Utility Assessment: Methods and Research Gretchen B. Chapman and Arthur S. Elstein 13 Costs and Cost-Effectiveness of New Technologies in Cancer Teresa M. Waters 25 Evaluating Cancer Costs in NCI Trials Kevin A. Schulman and William L. Boyko, Jr 37 Using State and Federal Claims Data to Evaluate the Patterns and Costs of Cancer Care Christopher E. Desch and Lynne T. Penberthy 53 Costs of Cancer Care: Is the Community Setting Different than the Academic? Jacob D. Bitran 71 Health Service Studies in the Terminally 111 Cancer Patient Thomas J. Smith 81 VI Racial Variation in Cancer Care: A Case Study of Prostate Cancer Ronnie D. Homer 99 Evaluating Focus Group Data: Barriers to Screening for Prostate Cancer Patients William Dale 115 Promoting Informed Decision Making: Hormone Replacement Therapy Lori A. Bastian, Grace Couchman, Barbara K. Rimer, Colleen M. McBride, Linda Sutton, andlleneC. Siegler 129 Breast Cancer Practice Patterns at VA Hospitals: Implications for Future Research DeniseM. Hynes and Lori A. Bastian 149 Health Services Research in Head and Neck Cancer David G. Pfister, Hirsch S. Ruchlin, and Elena B. Elkin 159 vu List of Contributors Lori A. Bastian, MD, MPH Center for Health Services Research in Primary Care Durham VA Medical Center Division of General Internal Medicine Duke University Medical Center Jacob D. Bitran, MD Department of Medicine University of Illinois (Chicago) Director, Division of Hematology/Oncology Lutheran General Hospital and Cancer Care Center William L. Boyko, Jr., Pharm D The Clinical Economics Research Unit Georgetown University Medical Center Gretchen B. Chapman, PhD Department of Psychology Rutgers University Grace Couchman, MD Department of Obstetrics and Gynecology The Womens Comprehensive Health Center Durham VA Medical Center William Dale, MA Harris School of Public Policy Studies Pritzker School of Medicine University of Chicago Christopher E. Desch, MD Department of Medicine Virginia Commonwealth University-Medical College of Virginia Director, Cancer Outreach and Control Massey Cancer Center Elena B. Elkin, BS Department of Public Health Cornell University Medical College Vlll Arthur S. Elstein, PhD University of Illinois at Chicago College of Medicine Westside VA Medical Center Patricia A. Ganz, MD Division of Cancer Prevention and Control Research UCLA Schools of Medicine and Public Health Ronnie D. Horner, PhD Acting Director, Center for Health Services Research in Primary Care Department of Medicine Duke University Medical Center Denise M. Hynes, RN, MPH, PhD Division of General Internal Medicine Loyola University, Chicago Midwest Center for Health Services and Policy Research Edward Hines Jr. VA Hospital Colleen M. McBride, PhD Duke Comprehensive Cancer Center Lynne T. Penberthy, MD, MPH Health Services Research Massey Cancer Center Virginia Commonwealth University David G. Pfister, MD Memorial Sloane-Kettering Cancer Center Jennifer L. Reifel, MD Division of Hematology and Oncology UCLA Center for Health Sciences Barbara K. Rimer, DrPH Department of Internal Medicine Duke University Medical Center Duke Comprehensive Cancer Center Hirsch S. Ruchlin, PhD Cornell University Medical College Program in Clinical Epidemiology and Health Services Research Cornell University Graduate School of Medical Sciences IX Kevin A. Schulman, MD, MBA The Clinical Economics Research Unit Georgetown University Medical Center Ilene C. Siegler, PhD, MPH Department of Psychiatry and Behavioral Sciences Duke University Medical Center Duke Comprehensive Cancer Center Thomas J. Smith, MD, FACP Massey Cancer Center Department of Medicine Virginia Commonwealth University-Medical College of Virginia Linda Sutton, MD Department of Internal Medicine Duke University Medical Center Duke Comprehensive Cancer Center Teresa M. Waters, PhD Institute for Health Services Research and Policy Studies Northwestern University XI Foreword Policy and outcomes studies represent a new area of research in oncology. Understanding the factors that affect quality of life, costs of care, patterns of care, and outcomes in oncology is important to providing comprehensive care. Quality of Hfe research, the subject of the chapter by Reifel and Ganz, is the most established area of health services in oncology, with the development of three generations of self-administered instruments. At the other end of the spectrum, utility assessment, described by Chapman and Elstein, is the newest area of study, with investigators developing innovative ways to query patients about the relative importance of alternative health states that are potential outcomes for the individual patient. These two chapters provide complementary assessments of health status of individual patients, by investigating how the patients might feel in the future (utility assessment) as well as describing how the patient felt in the past (quality of life assessment). Costs of cancer care have become one of the major determinants of the type and intensity of patient care. Waters describes the potential cost savings associated with development of new technologies such as peripheral blood stem transplantation. Given the importance of costs to managed care organizations and policy makers, Schulman and Boyko illustrate the feasibility of collecting economic information during the phase III clinical trial setting, an area of research that is of direct practical importance to policy makers who are affiliated with the National Cancer Institute cooperative clinical trial study groups. An additional source of cost information are the tumor registries of individual states in conjunction with the Federal Medicare files, as illustrated by Desch and Penberthy. While many recent studies focus on the costs of cancer care, few address the value of these services. Bitran provides new insights into the costs of cancer care in the community setting, an area of increasing importance in this era of managed care. Terminal care is among the most costly and poorest developed area of oncology care. Smith provides a nice overview of the breadth of research in this new area, with references to recently completed landmark studies such as the Study to Understand the Prognoses, Preferences, Outcomes, and Risks of Treatment (SUPPORT) study. Health services research studies often address difficult and controversial topics in oncology. Pfister and colleagues describe an example of one difficult area, the study of head and neck cancer patients, where most of the previous research has been directed to improvements in survival. Similarly, Hynes and Bastian illustrate a second problematic area, breast cancer care ( a common cancer) in the VA medical system (where women are decidedly uncommon). Racial/ethnic variations in oncology care mirror those found in almost all aspects of medicine. Homer provides some of the first evidence of large racial/ethnic variations in prostate cancer care, raising concern over the adequacy of care for African American males with prostate cancer. Dale uses focus group data to identify some of the cultural causes of variations in prostate cancer care. Finally, a fitting close to this first edition of cancer policy is the chapter on informed decision making for women who are contemplating hormone replacement therapy by Bastian and others. Health