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ATHE GAGING POPULATION IN THE TWENTY_ FIRST CENTURY Statistics for Health Policy Dorothy M. Gilford, Editor Pane} on Statistics for an Aging Population Sam Shapiro, Chair Committee on National Statistics Commission on Behavioral anct Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, D.C. 1988

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NationalAcademy Press 2101 Constitution Avenue,N.W. Washington, D. C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This report has been reviewed by a group other than the authors, according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the fil~l`.r~n~ of science and technology and to their use for the general welfare. Upon the _ _ _ _ . . . .. . ., ~ ~ =~- AL _ A _ _ ~ ~ ., ~ ~ A ^ ~^ authority of the charter granted to it by the Congress In loner cue Car:, bias ~ ~-,,-~= that requires it to advise the federal government on scientific and technical matters. Dr. Frank Press is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Robert M. White is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Samuel O. Thier is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Frank Press and Dr. Robert M. White are chairman and vice chairman, respectively, of the National Research Council. This project was supported with funds from the Veterans Administration and six agencies of the U.S. Department of Health and Human Services: the Health Care Financing Adminis- tration, the National Center for Health Statistics, the National Institute of Mental Health, the National Institute on Aging, the Office of the Assistant Secretary for Planning and Evaluation, and the Social Security Administration. library of Congress Cataloging-in-Publication Data National Research Council (U.S.). Panel on Statistics for an Aging Population. The aging population in the twenty-first century. Bibliography: p. 1. Aged Diseases-United States-Statistics. 2. Aged-Medical care United States-Statistics. 3. Aged Diseases-United States-Forecasting. 4. Health planning-United States. I. Gilford, Dorothy M. II. Title. [DNLM: 1. Aged-United States- Statistics. 2. Health Policy-United States. 3. Health services for the aged-United States. WT 100 N2775a] RA408.A3N37 362.1'9897'00973021 88-15151 ISBN 0-309-03881-2 Printed in the United States of America First Printing, May 1988 Second Printing, November 1988 Third Printing, October 1989

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PANES ON STATISTICS FOR AN AGING POPULATION SAM SHAPIRO (Chair), Health Services Research and Development Center, Johns Hopkins University DAN GERMAN BLAZER II, Department of Psychiatry, Duke University Medical Center LAURENCE G. BRANCH, School of Public Health, Boston University NEAL E. CUTLER, Department of Political Science, University of Southern California JEANNE E. GRIFFITH, Congressional Research Service, Library of Congress ROBERT LOUIS KAHN, Institute for Social Research, University of Michigan GARY G. KOCH, Department of Biostat~tics, University of North Carolina JUDITH RICE LAVE, Graduate School of Public Health, University of Pittsburgh KENNETH G. MANTON, Center for Demographic Studies, Duke University DOROTHY P. RICE, Aging Health Policy Center, University of California, San Franc~sco JOHN W. ROWE, Department of Gerontology, Harvard University ETHEL SHANAS, Department of Sociology (emeritus), University of Lois, Chicago JAMES H. WARE, Department of Biostat~tics Public Health DOROTHY M. GILFORD, Study Director CAROLYN ROGERS, Research Associate ANNE M. SPRAGUE, Research Assistant LILLIAN GURALNICK, Consultant THOMAS JABINE, Consultant JANE TAKEUCHI, Consultant CARLO TTA MOLITOR, Administrative Secretary ~- 111 , Harvard School of

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Liaison Representatives RONALD P. ABELES, National Institute on Aging MICHELE ADLER, Department of Health and Human Services BARBARA J. BURNS, National Institute of Mental Health PAUL GAYER, Department of Health and Human Services JUDITH KASPER, Health Care Financing Administration BARRY LEBOWITZ, National Institute of Mental Health PHYLLIS THORBURN, Veterans Administration MELINDA UPP, Social Security Administration JOAN VAN NOSTRAND, National Center for Health Statistics 1V

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COMMITTEE ON NATIONAL STATISTICS BURTON H. SINGER (Chair), Department of Epidemiology and Public Health, Yale University JAMES O. BERGER, Statistics Department, Purdue University DAVID H. BLACKWELL, Department of Statistics, University of California, Berkeley NORMAN M. BRADBURN, University of Chicago LOUIS GORDON, Department of Mathematics, University of Southern California JERRY A. HAUSMAN, Department of Economics, Massachusetts Institute of Technology F. THOMAS JUSTER, Institute for Social Research, University of Michigan GRAHAM KALTON, Survey Research Center, University of Michigan NAN M. LAIRD, Department of Biostatistics, Harvard School of Public Health JANE M. MENKEN, Office of Population Research, Princeton University JOHN W. PRATT, Graduate School of Business, Harvard University S . JAMES PRESS, Department of Statistics, University of California, Riverside COURTENAY M. SLATER, CEC Associates, Washington, D.C. KENNETH W. WACHTER, Department of Demography, University of California, Berkeley MIRON L. STRAP, Director EDWIN D . GOLDFIELD, Senior A ssociate MICHELE W . ZINN, Administrative Associate

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Contents PREFACE 1 Introduction and Summary of Recommendations 2 Social, Economic, and Demographic Changes Among the Elderly 3 Health Status and Quality of Life 4 Health Transitions and the Compression of Morbidity 5 Health Promotion and Disease Prevention 6 Quality of Care 7 Long-term Care 8 The Financing of Health Care Services for the Elderly 9 Health Services Utilization 10 Enhancing the Utility of Statistical Systems 11 Statistical Methodology for Health Policy Analysis REFERENCES APPENDICES A Background Papers B Effects of Budgetary Constraints on Federal Statistical Programs Descriptions of Data Bases Mentioned in the Panel's Recommendations D Long-term Health Care Minimum Data Set . . V11 1X 1 52 65 94 108 126 135 150 178 202 236 259 279 281 287 313

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~- - V111 Descriptions of Data Bases Mentioned in the Panel's Reco~runendations D Long-term Health Care Minimum Data Set E Acronyms F Biographical Sketches CONTENTS 287 313 316 319

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Preface Concern about the aged has surfaced in recent years with such dramatic force and recognition by so many that the national re- sponse will have consequences far into the future, as has been true in past years. During the Great Depression, 01d Age and Survivors Insurance (Social Security) was legislated to create a partnership of workers, employers, and government to make certain that income would not end for workers and their dependents simply because of advanced age. In 1965, after debates about national health insur- ance, Medicare was legislated to increase the access of the aged to health services by reducing economic barriers to care. While not as dramatic or comprehensive as these economic and health care mea- sures, the Older Americans Act in 1965 and subsequent amendments opened the door to social and health-related programs that reach the elderly at the grass roots. Today, the aged hold a central position in the preoccupation of policy makers in the legislative and executive branches of government about costs, organization, and quality of health services. This results from a conjunction of circumstances representing a mix of knowns and unknowns about the aged. We can describe with considerable certainty the growth of the elderly population that will follow from the present age composition of the population and the increases in life expectancy being experienced at every age, including the elderly. We also know that the need for institutional and noninstitutional health care and the related costs are high among the aged, generally, and that these increase substantially with advancing age. 1X

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x PREFA CE But we are far from certain about the nature of the changes in health and functional status that may be under way among the aged, i.e., whether increases in longevity are associated mainly with longer periods of chronic illness and prolongation of dependency or with additional years of well-being and independent functioning. Further- more, it is not certain how current and future policies designed to change the structure of the health care system and the costs and financing of health services affect access to care, the quality of care, and the quality of life for the elderly. The issues involved are complex, but we are fortunate to have strong data systems that can be directed to meet the needs for information. This report is the product of a study that takes stock of specific questions faced in developing health policy for the elderly and charts a course for producing information from the existing national data systems to arrive at answers. The conclusions and recommendations represent the end point of a Tong process. ORIGIN OF THE STUDY The Panel on Statistics for an Aging Population was established in September 1984 under the aegis of the Committee on National Statistics and within the National Research Council to study the adequacy of current statistical information and methodology, partic- ularly in the area of health and medical care, for an aging population. The panel's study is an outgrowth of an initiative throughout the Na- tional Academy of Sciences in aging begun in 1982 and coordinated by the Institute of Medicine. A standing committee, the Committee on an Aging Society, was established to develop a program of stud- ies to address the major societal issues resulting from the changing demographics of the U.S. population. In April 1983 the Academy complex sponsored a conference to determine whether the available statistics are adequate for policy analysis for the aging society or whether a study on this topic was warranted. The conference participants included representatives of several federal agencies and of organizations concerned with aging, congressional staff, and researchers on aging. The conferees iden- tified a substantial number of problems with data on aging and strongly endorsed the need for a thorough study of the problems and the changes, large and small, that would increase the utility of national data systems. The task was seen as being of major propor- tions, and funding for a panel to study the issues was obtained from

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PREFACE X1 the Veterans Administration and six agencies of the Department of Health and Human Services: the Office of the Assistant Secretary for Planning and Evaluation, the National Center for Health Statistics, the National Institute on Aging, the National Institute of Mental Health, the Health Care Financing Administration, and the Social Security Administration. Panel members included individuals long experienced in health matters and drawn from many disciplines in- cluding statistics, health sciences, social sciences, and medicine (see Appendix F for biographical sketches). EARLY PANEL ACTIVITIES Pane! members initially identified 12 issue areas relevant to the charge and commissioned experts in these areas to prepare back- ground papers (Appendix A). These became working documents throughout our deliberations and were drawn on extensively in the preparation of this report. They represent significant contributions in themselves and will be published in a separate volume by the National Center for Health Statistics. To identify data gaps, detailed knowledge of existing data sets was needed. The pane! therefore developed a compilation of de- scriptions of available data sets relative to the health of the elderly, since existing inventories were out of date. The resulting volume, Inventory of Data Sets Related to the Health of the Elderly, describes 117 data sets and was published by the U.S. Senate Subcommittee on Aging in connection with the June 1986 Hearings on Statistical Policy for an Aging America. To obtain advice from a wide range of experts and interested per- sons and organizations, the panel sponsored a one-day symposium in September 1985. The purpose of the symposium was to stimulate dis- cussion about statistical problems encountered by policy makers and members of the research community in addressing issues concerned with an aging population. The panel's commissioned papers served as the focus of the symposium. More than 100 persons participated, including congressional staff, researchers on aging, and representa- tives from federal agencies, professional societies, and public interest groups.

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- X11 PREFACE CONCURRENT ACTIVITIES During the course of the study, several major events related to the panel's charge took place. One was the Summit on Aging- Related Statistics, cosponsored by the National Institute on Aging and the Bureau of the Census, on May 2, 1986. The purpose of the summit was to determine how the federal statistical system can provide the data needed to answer policy questions for an aging so- ciety in a cost-efficient manner. To this end, participating agency directors prepared statements of their views of the vital issues re- garding the elderly and agreed to establish an Interagency Forum on Aging-Related Statistics to encourage cooperation among the federal agencies in the development and coordination of data on the older population. Special attention was given to the areas of demography, epidern~ology, health service utilization and costs, and socioeconomic characteristics of the elderly. The forum, now with multiagency par- ticipation, provides an important, ongoing mechanism for assessment by those targeted by the specific recommendations in this report and the measures needed to effect changes in data systems and in the production and analysis of information. The other major event was a joint hearing on Statistical Policy for an Aging America held on June 3, 1986, by the Subcommittee on Aging of the U.S. Senate Committee on Labor and Human Resources and the Subcommittee on Energy, Nuclear Proliferation, and Gov- ernment Processes of the U.S. Senate Committee on Governmental Affairs. The hearing examined the need to link data collection and research to planning and policy development, promote research co- ordination among the federal data collection agencies, and improve data accessibility, data quality, policy relevance, and the dissemina- tion of aging-related statistics. The pane] chair gave testimony on the concerns and preliminary conclusions of the panel. A third related development is that a number of federal agencies have already taken steps to implement some of the panel's ideas a fact that is not surprising, since in the course of the study some agency heads shared with the pane} their long-range plans in a most beneficial interactive process. Staff members from the seven spon- soring agencies not only provided current information on agency activities, but also heard the pane! discussions that led to the rec- ommendations. In addition, staff from several agencies briefed us on plans for specific surveys; some of our recommendations are in fact our endorsement of aspects of these plans. Most of our recomrnenda- tions regarding surveys are for continuing surveys; continuity remains

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PREFACE - X111 an important aspect of the recommendations, even though we have evidence that the first implementation steps have been taken. ACKNOWLEDGMENTS The report as a whole represents contributions from every mem- ber of the panel. Many of the chapters were drafted and redrafted by pane! members, and ah chapters were subjected to detailed re- view at numerous sessions. The pane! divided itself into working groups, which determined the structure and most of the substance of the report; the pane! is particularly indebted to the chairs of the three working groups for their efforts. The Working Group on Health and Related Issues and Data Requirements, chaired by Daniel Blazer II, identified topics the pane} should consider. The Working Group on Improvement of Data Resources for Policy Analysis of Ag- ing, chaired by Dorothy Rice, developed the recornrnendations to fill the data gaps. The Working Group on Statistical Methodology for Health Policy Analysis, chaired by Gary Koch, took responsibility not only for the chapter on statistical methodology, but also for much of the material on health transitions and longitudinal studies found in other chapters. The pane! profited greatly from the perspectives provided by the liaison representatives of the seven federal agencies who sponsored the study; they were always ready to respond to questions raised by the panel. The liaison representatives, and in addition Jacob Feldman of the National Center for Health Statistics and Richard Suzman of the National Institute for Aging, deserve special thanks for their willingness to share with the pane! their in-depth knowI- edge of health data and research related to the elderly. Early in the study, Leo Selker, who as a National Research Council fellow in residence at the Institute of Medicine, participated in the panel activities, contributed material for the demography chapter, and pro- vided effective coordination with the Institute's activities related to the elderly. Joan Van Nostrand of the National Center for Health Statistics deserves our special appreciation not only for her manage- ment skill as monitor of a project complicated by multiple agency funding, but also, and more important, for her many contributions to the panel's activities and deliberations. Her advice and suggestions contributed significantly to the panel's report. Our report also benefited from frequent dialogues with the Com- m~ttee on National Statistics, which was chaired by Steven Fienberg

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XIV PREFA GE during our study, and thoughtful comments from the reviewers for the committee as well as reviewers for the Commission on Behavioral and Social Sciences and Education. Burton Singer, the current chair of the committee, was particularly helpful in drafting material for the sections on designs and strategies for longitudinal data analysis for the chapter on statistical methodology. The panel appreciates the encouragement and administrative assistance received from Edwin D. Goldfield, director of the Committee on National Statistics while the study was under way, and from Miron Straf, the committee's director while the report was being prepared for publication. The report was markedly improved by the helpful suggestions made by Christine McShane, editor, and by the skillful reorganization of one chapter by Eugenia Grohman, associate director for reports, of the Commission on Behavioral and Social Sciences and Education. The panel's support staff at the National Research Council was dedicated and effective. Thanks are due to Carolyn Rogers, who was on detail to the project staff from the Census Bureau for the first year of the study, during which she drafted material for the demog- raphy chapter; to Cariotta Molitor who, in addition to satisfying all the secretarial demands for a large study, handled the logistics for the symposium and the numerous meetings of the panel and its working groups; and to Anne Sprague, who managed the final stages of preparing the report for publication. Three consultants made special contributions to the report: Lillian GuraInick had primary responsibility for compiling the Inventory of Data Sets Related to the Health of the Elderly and also assisted in collecting information and redrafting parts of the report; Thomas Jabine prepared the section on record linkage; and Jane Takeuchi drafted much of the material on health promotion and disease prevention in addition to the material on health care expenditures. The individual most responsible for originating the study and bringing it to a successful conclusion is Dorothy Gilford, the study director. Only an experienced hand could have overcome the dif- ficulties a complex project of this type involves, and she had the wisdom, patience, and, in the end, the energy to bring the report to completion. Personally, and as chair of the panel, ~ am indebted to her. Finally, ~ feel privileged to have had the opportunity to chair a panel that worked so well together and gave so much more time than could have been anticipated. ~ am confident that their efforts will have a lasting influence on the availability of information required

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on ~ to develop health policy and to evaluate the exact of the measures adopted. Saw Sbaplro, Cb~lr Panel on Statistics for ~ ^glog Population

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