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Monograph of the Council on Heath Care Technology Quality of Life and T~ . ecnnology Assessment . Frederick Mosteller and Jennifer Falotic - Taylor, editors Institute of Medicine NATIONAL ACADEMY PRESS WASHINGTON, D.C. 1989

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THE INSTITUTE OF MEDICINE was chartered in lg70 by the National Academy of Sciences to enlist distinguished members of appropriate professions in He examination of policy makers pairing to the health of the public. In this, the Institute acts under both He Academy's 1863 congressional charter responsi- bility to be an adviser to the federal government, and its own initiative in identifying issues of medical care, research, and education. THE COUNCIL ON HEALTH CARE TECHNOLOGY was established in 1986 by the Institute of Medicine of the National Academy of Sciences as a public-pr~vate entity to address issues of heals care technology and technology assessment The council is committed to the well-being of patients as He funda- menm1 purpose of technology assessment. In pursuing Hat goal, the council draws on the services of the naiion's experts in medicine, health policy, science, engineering, and industry. This monograph was supported in part by a grant to the Council on Health Care Technology of the ~sutute of Medicine from Be National Center for Health Services Research and Health Care Technology Assessment of the U.S. Depart- ment of Health and Human Services (grant no. MS 0552602~. The opinions and conclusions expressed here are those of the authors and do not necessarily repre- sent the views of the Department of Health and Human Senices, the Nanona Academy of Sciences, or any of their constituent parts. Library of Congress Catalog Card Number 89-62S85 International Standard Book Number ~309-04098-1 Additional copies of this report are available from: National Academy Press 2101 Constitution Avenue, NW Washington, DC 20418 S032 Printed in the United States of Hence First Printing, October 1989 Second Ptinting May 1991

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ACKNOWLEDGMENTS This monograph was encouraged by me Council on Heals Care Tech- nology as a con~ibudon of Be Me~ods Pane} in canying out its charge to develop and Prove the methodologies, techniques, and procedures of technology assessment. Members of Me Me~ods Parted provided com- ments concerning the ordeal plan and Me drafts of this volume. ~ He early stages William N. Hubbard, Richard A. Reuig, and Ennqueta Bond helped launch the project; Clifford Goodman, Leslie Hardy, and Sharon Saran have helped it Trough to completion; Kathleen N. Lohr has par- dcipated in He editing. The council and He Me~ods Pane] greatly appreciate me willingness of He authors to produce Heir chapters promptly and Heir help ~ugh- out He editing of He monograph. The staff of the Technology Assessment Group of He Harvard School of Public Heath, especially Mane McPherson, and its Sloan Foundation project members have aided in br~.n~r~g He project to completion. Peg Hewitt contributed to the literature searches. The Health Science Policy Working Group in He Division of Health Policy Research and Education, supported by me Andrew K. Mellon Foundation, has also helped make this monograph possible. .

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Council on Health Care Technology Chapman WILLIAM N. HUBBARD, JR. Former President, The Upjohn Company Co-Chainnan JEREMIAH A. BARONDESS Irene F. and I. Roy Psaty D~sunguished Professor of Clinical Medicine, Cornell University Medical College Members HERBERT L. ABRAMS Professor of Radiology, Stanford University School of Medicine RICHARD E. BEHRMAN Dean, School of Medicine, Case Western Reserve University PAUL A. EBERT Director, American College of Surgeons PAUL S. EN~dACHER Senior Vice-President and Chief Medical Director, Metropolitan Life Insurance Company MELVIN A. GLASSER Director, Health Security Action Council 1V BENJAMIN L. HOL=S Vice-President and General Manager, Medical Products Group, lIewlett-Packard Company GERALD D. LAUBACH President, Pfizer Inc. WALTER B. MAILER Director, Employee Benefits, Chrysler Corporation WAYNE R. MOON Executive Vice-President and Operations Manager, Kaiser Foundation Health Plan, Inc. LAWRENCE C. MORRIS, JR. Senior Vice-President, Health Benefits Management, Blue Cross and Bllle Shield Association FREDERICK MOSTELLER Roger I. Lee Professor ~mentus), Harvard School of Public Heals MARY 0. MUNDINGER Dean, School of Nursing, Columbia University ANNE A. SCITOVSKY Chief, Health Economics Department, Palo Alto Medical Foundation GAIL L. WARDEN Chief Executive Officer, Group Heals Cooperative of Pllget Solmd

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Methods Parted Chairman FREDERICK MOSTELLER Roger I. Lee Professor (Emeritus), Harvard School of Public Health Co~hairman HERBERT L. ABRAMS Professor of Radiology, Stanford University School of Medicine Members RICHARD E. BEHRMAN Dean, School of Medicine, Case Western Reserve University PAUL A. EBERT Director, American College of Surgeons DAVID M. EDDY Center for Health Policy Research and Education, Duke University JOHN H. t-=GUSON Director, Office of Medical Applications of Research, National Institutes of Health SUSAN D. HORN Associate Director, Center for Hospital Finance and Management, Johns Hopkins University School of Hygiene and Public Health BRYAN R. LUCK Senior Research Scientist, Battelle Human Affairs Research Centers ANNE A. SCITOVSKY Chief, Health Economics Deparunent, Palo Alto Medical Foundation STEPHEN B. THACKER Assistant Director for Sciences, Center for Environmental Health, Atlanta, Georgia ELEANOR TRAVERS Chair, Task Force on Technology Assessment, Veterans Administration NORMAN W. WEISSMAN Director, Division of Extramural Research, National Center for Health Services Research v

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PREFACE An the recent past me interests of different groups concern with heal care have focused on He use of medical technologies their ~m- pacts on safety, efficacy, and electiveness; cost-effectiveness and cost- benefit; quality; and Heir social, legal, and ethical implications. The sum of these varied interests is He field of heady care technology assessment. The Council on Heady Care Technology was created to promote He development and application of technology assessment In heath care and me review of heath care technologies for Heir appropriate use. The council was established as a public-pnvate enterprise at He Institute of Medicine, a component of the Nabonal Academy of Sciences, Trough the Heath Promotion and Disease Prevention Amendments of 1984 O>~. 98- 55l, later~ended by.. 99-117~. ~ 1987 He U.S. Congress extended support for He council as a public-pnvate venture for an additional three years (by Pa. 100-1771. The goals and objectives of He council, as stated In He report of its first two years of operation, are "to promote the development and application of technology assessment In medicine and to review medical technologies for their appropriate use. The council is guided in its efforts by the belief that the fundamental purpose of technology assessment is to improve well-being and He quality of care." In pursuing these goals He council seeks to improve the use of medical technology by developing and evalu- ating the measurement criteria and He mesons used for assessment; to promote education and training In assessment methods; and to provide technical assistance in the use of data from published assessments. The council conducts its activities Trough several working and liaison panels. Members of these panels reflect a broad set of interested constitu- encie~physicians and other health professionals, patients and Heir fami- lies, payers for care, biomedical and heady services researchers, manufac- turers of heal~-related products, managers and administrators throughout the heady care system, and public policymakers. In addition, it carries out councilwide activities that utilize the specific assignments of more Han one panel. This monograph contributes to the series of occasional publications of the council in carrying out its several missions. A guiding principle of He council is a special focus on outcome measures Hat coincide win patient well-being, quality of heals care, and quality of life. William N. Hubbard, Ir., Chairman Jeremiah A. Barondess, Co-Chainnan . V11

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CONTENTS 1. Conceptual Background and Issues in Quadity of Life ..... Rathieen N. Lohr 2. The Use of Quality-of-Life Measures in Technology Assessment . ~ e ~ e e e ~ - e ~ ~ ~ e e e e ~ e e e e e e - e e e e ~ e - Jennifer Falotico-T~ylor, Mark McClellan, arm Frederick Mosteller Twelve Applications of Quality-of-Life Measures to Technology Assessment, 14 3. Quality-of-Life Measures In Liver Transplantation Mark S. Roberts 4. Quadity-of-Life Measures and Me~ods Use to Study Andhypertensive Medications ............................ So! Levine and Sydney H. Croog The Use of Quality-of-Life Measures in Me Private Sector . Bryan R. Luce, Joan M. WeschEer, aru] Carol Underwood Assessing Quality of Life: Measures and Utility .... ]. Ivan Williams and Sharon Wood-Dauphinee Wee Sources of Descnptive Information for Quality-of-Life Measures. 83 Ten Review Forms for Quality-of-Life Measures, 89 7. Applications of Quality-of-Life Measures and Areas for Cooperative Research . e ~ e e e e e e e e e e e e e e Jennifer FaEotico-TayEor and Fredlerick MosteEEer The Authors 7 e 45 51 e 55 6s e 6 9

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