IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY IN POPULATION SURVEYS

Beyond ADLs and IADLs

Summary of a Workshop

Gooloo S. Wunderlich, Rapporteur

Committee on National Statistics

and

Committee on Population

Division of Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY IN POPULATION SURVEYS IMPROVING THE MEASUREMENT Beyond ADLs and IADLs OF LATE-LIFE DISABILITY IN POPULATION SURVEYS Beyond ADLs and IADLs Summary of a Workshop Summary of a Workshop Gooloo S. Wunderlich, Rapporteur Committee on National Statistics and Committee on Population Division of Behavioral and Social Sciences and Education

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NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. N01-OD-4-2139, TO # 195 between the National Academy of Sciences and the National Institute on Aging. Support of the work of the Committee on National Statistics is provided by a consortium of federal agencies through a grant from the National Science Foundation (Number SES-0453930). Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13: 978-0-309-14371-4 International Standard Book Number-10: 0-309-14371-3 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap. edu. Copyright 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Research Council. (2009). Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs, Summary of a Workshop. Gooloo S. Wunderlich, Rapporteur. Committee on National Statis- tics and Committee on Population. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone 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 en- gineers. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles. M. Vest 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 Insti- tute 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. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences 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 Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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STEERING COMMITTEE ON IMPROVING SURVEY MEASUREMENT OF LATE-LIFE DISABILITY: BEYOND ADLs AND IADLs ALAN M. JETTE (Chair), Health & Disability Research Institute, Boston University VICKI A. FREEDMAN, School of Public Health, University of Medicine and Dentistry of New Jersey LINDA P. FRIED, Mailman School of Public Health and College of Physicians and Surgeons, Columbia University Medical Center LINDA G. MARTIN, Senior Fellow, RAND Corporation JOSHUA SALOMON, School of Public Health, Harvard University ARTHUR A. STONE, Department of Psychiatry and Psychology, Stony Brook University GOOLOO S. WUNDERLICH, Study Director BRIDGET EDMONDS, Administrative Assistant iv

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COMMITTEE ON NATIONAL STATISTICS 2009 WILLIAM F. EDDY (Chair), Department of Statistics, Carnegie Mellon University KATHARINE ABRAHAM, Department of Economics, University of Maryland, and Joint Program in Survey Methodology ALICIA CARRIQUIRY, Department of Statistics, Iowa State University WILLIAM DuMOUCHEL, Phase Forward, Inc., Waltham, MA JOHN HALTIWANGER, Department of Economics, University of Maryland V. JOSEPH HOTZ, Department of Economics, Duke University KAREN KAFADAR, Department of Statistics, Indiana University DOUGLAS MASSEY, Department of Sociology, Princeton University SALLY C. MORTON, Statistics and Epidemiology, Research Triangle Institute, NC JOSEPH NEWHOUSE, Division of Health Policy Research and Education, Harvard University SAMUEL H. PRESTON, Department of Sociology, University of Pennsylvania HAL STERN, Department of Statistics, University of California, Irvine ROGER TOURANGEAU, Joint Program in Survey Methodology, University of Maryland ALAN ZASLAVSKY, Department of Health Care Policy, Harvard Medical School CONSTANCE F. CITRO, Director v

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COMMITTEE ON POPULATION LINDA J. WAITE (Chair), Department of Sociology, University of Chicago EILEEN M. CRIMMINS, Department of Sociology, University of Southern California PETER J. DONALDSON, Population Council, New York BARBARA ENTWISLE, Department of Sociology, University of North Carolina JOSHUA R. GOLDSTEIN, Max Planck Institute for Demographic Research, Rostock, Germany CHARLES HIRSCHMAN, Department of Sociology, University of Washington BARTHÉLÉMY KUATE-DEFO, Department of Demography, University of Montreal WOLFGANG LUTZ, World Population Program, International Institute for Applied Systems Analysis, Laxenburg, Austria DUNCAN THOMAS, Economics Department, Duke Global Health Institute, Duke University BARBARA B. TORREY, Population Reference Bureau, Inc., Washington, DC MAXINE WEINSTEIN, Center for Population and Health, Georgetown University BARNEY COHEN, Director JACQUELINE R. SOVDE, Senior Program Assistant vi

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Acknowledgments T his report is a summary of the January 2009 workshop, Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs. The workshop was convened by the Committee on National Statistics (CNSTAT) in collaboration with the Committee on Population, both in the Division of Behavioral and So- cial Sciences and Education (DBASSE) of the National Research Council (NRC). Support for the workshop was provided by the National Institute on Aging. As chair of the steering committee to plan the workshop, I wish to thank my colleagues on the committee for their helpful guidance and leader- ship in planning the workshop and moderating the sessions. I acknowledge with appreciation the many people who participated in the workshop and contributed to its success. I thank all the presenters for their expert presentations and Barbara Altman for a comprehensive background paper. I also thank all the participants for their stimulating and insightful comments and discussion. On behalf of the steering committee, I acknowledge with gratitude the contributions of staff. Constance F. Citro, director of CNSTAT, provided guidance and support throughout the project. Gooloo S. Wunderlich, study director for the workshop, did an outstanding job of overseeing the detailed planning of the workshop based on the guidance of the steering commit- tee, as well as preparing this summary and responding to the comments of the reviewers. Bridget Edmonds managed the administrative details and workshop arrangements. Eugenia Grohman, associate director for reports, DBASSE, and Christine McShane, senior editor, DBASSE, provided profes- vii

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viii ACKNOWLEDGMENTS sional editing advice, and Kirsten Sampson-Snyder efficiently shepherded the report through the report review process. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the Report Review Committee of the NRC. The purpose of this independent review is to provide candid and critical com- ments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: Arun Karlamangla, Geriatric Medicine, University of California, Los Angeles; David W. Keer, Office of Special Education and Rehabilitative Services, U.S. Department of Education; Robert A. Pollak, Olin Business School, Washington University; and Robert B. Wallace, Department of Epidemiol- ogy, College of Public Health, University of Iowa. Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the report nor did they see the final draft of the report before its release. The review of this report was overseen by Eileen M. Crimmins, Davis School of Gerontology, University of Southern California. Appointed by the NRC, she was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the author and the institution. Alan M. Jette, Chair Steering Committee on Improving Survey Measurement of Late-Life Disability: Beyond ADLs and IADLs

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Contents 1 Introduction 1 Background, 1 Lack of Consistency in Definition of Disability, 4 Historical Views of Disability, 6 Workshop Plan and Report Overview, 8 2 Challenges to Improving Measurement of Late-Life Functioning and Disability 11 Population Survey Measures of Functioning: Strengths and Weaknesses, 11 Developing Questions to Identify People Early in the Disablement Process, 17 Enhancing the Ascertainment of Disability, 20 Self Versus Proxy Responses in Surveys, 22 Expanding Modes of Survey Administration, 25 Discussion, 27 3 Potential Methods for Revising Measures to Foster Comparability Across Subgroups 31 Performance Measures in Surveys, 31 Improving Patient-Reported Measures Using Item Response Theory and Computer-Adaptive Testing, 36 Use of Easily Collected Biomarkers of Chronic Diseases, 40 Developing Measures of Time Use to Study Disability, 43 Discussion, 49 ix

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x CONTENTS 4 Improving the Validity of Cross-Population Comparisons 51 Additional Measures of Limitations in Cognitive Functioning and Disability, 51 Using Vignettes to Improve Cross-Population Comparability of Self-Rated Disability Measures, 55 New Approaches to Cognitive and Field Testing of Disability Measures, 59 Discussion, 65 5 Measuring Functioning and Disability in Context 69 Incorporating Assistive Technology and Home Modification Measures, 69 Incorporating Questions on Behavioral Adaptations in Functional Limitation Measures, 74 Utility of Participation Measures in Surveys, 78 Discussion, 81 6 Research and Development Toward Improved Measures of Late-Life Disability 85 Panel Comments, 85 Discussion, 89 Concluding Comments, 92 References 93 Appendixes A Population Survey Measures of Functioning: Strengths and Weaknesses 99 Barbara M. Altman B Workshop Agenda and Presenters 157 C Biographical Sketches of Steering Committee Members 163