SURVEY MEASUREMENT OF WORK DISABILITY

Summary of a Workshop

Nancy Mathiowetz and Gooloo S. Wunderlich, Editors

Committee to Review the Social Security Administration's Disability Decision Process Research

Dorothy Rice, Chair

Division of Health Care Services

INSTITUTE OF MEDICINE

and

Committee on National Statistics

Commission on Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL

NATIONAL ACADEMY PRESS
Washington, D.C.



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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop SURVEY MEASUREMENT OF WORK DISABILITY Summary of a Workshop Nancy Mathiowetz and Gooloo S. Wunderlich, Editors Committee to Review the Social Security Administration's Disability Decision Process Research Dorothy Rice, Chair Division of Health Care Services INSTITUTE OF MEDICINE and Committee on National Statistics Commission on Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS Washington, D.C.

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop NATIONAL ACADEMY PRESS 2101 Constitution Avenue, NWWashington, DC20418 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. Support for this project was provided by Contract No. 600-96-27893 between the National Academy of Sciences and the Social Security Administration. The views presented in this report are those of the Institute of Medicine Committee to Review the Social Security Administration 's Disability Decision Process Research and are not necessarily those of the funding agencies. International Standard Book Number 0-309-06899-1 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, NW, Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's home page at www.nap.edu. The full text of this report is available at www.nap.edu/readingroom. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. For more information about the Committee on National Statistics, visit the CNSTAT home page at www2.nas.edu/cnstat. Copyright 2000 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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 Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts 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. William A. Wulf 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. Kenneth I. Shine 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. Bruce M. Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop COMMITTEE TO REVIEW THE SOCIAL SECURITY ADMINISTRATION'S DISABILITY DECISION PROCESS RESEARCH DOROTHY P. RICE (Chair), Professor Emeritus, Department of Social and Behavioral Sciences, Institute for Health and Aging, University of California at San Francisco MONROE BERKOWITZ, Professor of Economics, Emeritus, and Director, Disability and Health Economics Research, Rutgers University, New Brunswick, New Jersey RONALD S. BROOKMEYER, Professor of Biostatistics, The Johns Hopkins University School of Hygiene and Public Health GERBEN DEJONG, Director, National Rehabilitation Hospital Research Center, and Professor of Family Medicine and Adjunct Professor, Georgetown University Institute of Public Policy, Washington, D.C. MARSHAL F. FOLSTEIN, Chairman and Professor of Psychiatry, Tufts University School of Medicine; and Psychiatrist-in-Chief, New England Medical Center, Boston, Massachusetts ROBERT M. GROVES, Director of the Joint Program on Survey Methodology at the University of Maryland at College Park; and Professor and Program Director, Survey Research Center of the University of Michigan at Ann Arbor ALAN M. JETTE, Professor and Dean, Sargent College of Health and Rehabilitation Sciences, Boston University WILLIAM D. KALSBEEK, Professor of Biostatistics and Director, Survey Research Unit, University of North Carolina at Chapel Hill JERRY L. MASHAW, Sterling Professor of Law and Management and Professor, Institute for Social and Policy Studies, Yale University CATHARINE C. MASLOW, Director, Initiative on Alzheimer's and Managed Care, Alzheimer's Association, Washington, D.C. DONALD L. PATRICK, Professor of Health Services, University of Washington School of Public Health and Community Medicine HAROLD A. PINCUS, Senior Scientific Consultant, Robert Wood Johnson Foundation, the John D. & Catherine T. MacArthur Foundation, and the RAND Corporation JOHN A. SWETS, Chief Scientist, Information Sciences, BBN Technologies, Cambridge, Massachusetts EDWARD H. YELIN, Professor of Medicine and Health Policy, Department of Medicine and Institute for Health Policy Studies, University of California at San Francisco Study Staff GOOLOO S. WUNDERLICH, Study Director KATHLEEN NOLAN, Research Associate NICOLE AMADO, Senior Project Assistant

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop BOARD ON HEALTH CARE SERVICES INSTITUTE OF MEDICINE DON E. DETMER (Chair), Professor of Medical Education in Health Evaluation Sciences, University of Virginia BARBARA J. McNEIL (Vice Chair), Ridley Watts Professor, Department of Health Care Policy, Harvard Medical School LINDA AIKEN, The Claire M. Fagin Leadership Professor of Nursing and Professor of Sociology, and Director of the Center for Health Outcomes and Policy Research, University of Pennsylvania STUART H. ALTMAN, Sol C. Chaikin Professor of National Health Policy, The Florence Heller Graduate School for Social Policy, Brandeis University HARRIS BERMAN, Chairman and Chief Executive Officer, Tufts Health Plan, Waltham, Massachusetts BRIAN BILES, Senior Vice President, The Commonwealth Fund, New York, New York CHRISTINE CASSEL, Chairman, Henry L. Schwarz Department of Geriatrics and Adult Development, Mount Sinai Medical Center, New York, New York PAUL D. CLAYTON, Medical Informaticist, Intermountain Health Care, Salt Lake City, Utah PAUL F. GRINER, Vice President and Director, Center for the Assessment and Management of Change in Academic Medicine, Association of American Medical Colleges, Washington, D.C. RUBY P. HEARN, Senior Vice President, Robert Wood Johnson Foundation, Princeton, New Jersey PETER BARTON HUTT, Partner, Covington and Burling, Washington, D.C. ROBERT L. JOHNSON, Professor of Pediatrics and Clinical Psychiatry and Director of Adolescent and Young Adult Medicine, University of Medicine and Dentistry of New Jersey, New Jersey Medical School JACQUELINE KOSECOFF, President and Co-Chief Executive Officer, Protocare, Santa Monica, California SHEILA T. LEATHERMAN, Executive Vice President, Center for Health Care Policy and Evaluation, United Health Care Corporation, Minneapolis, Minnesota UWE E. REINHARDT, James Madison Professor of Political Economy and Professor of Economics and Public Affairs, Princeton University SHOSHANNA SOFAER, Robert P. Luciano Professor of Health Care Policy, School of Public Affairs, Baruch College GAIL L. WARDEN, President and Chief Executive Officer, Henry Ford Health System, Detroit, Michigan JANET M. CORRIGAN, Director, Board on Health Care Services, IOM

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop COMMITTEE ON NATIONAL STATISTICS NATIONAL RESEARCH COUNCIL JOHN E. ROLPH (Chair), Marshall School of Business, University of Southern California JOSEPH G. ALTONJI, Department of Economics, Northwestern University JULIE DAVANZO, RAND, Santa Monica, California WILLIAM F. EDDY, Department of Statistics, Carnegie Mellon University WILLIAM D. KALSBEEK, Survey Research Unit, Department of Biostatistics, University of North Carolina RODERICK J. A. LITTLE, School of Public Health, University of Michigan THOMAS A. LOUIS, Division of Biostatistics, University of Minnesota CHARLES F. MANSKI, Department of Economics, Northwestern University WILLIAM D. NORDHAUS, Department of Economics, Yale University JANET L. NORWOOD, The Urban Institute, Washington, D.C. EDWARD B. PERRIN, Department of Health Services, University of Washington PAUL R. ROSENBAUM, Department of Statistics, The Wharton School, University of Pennsylvania FRANCISCO J. SAMANIEGO, Division of Statistics, University of California at Davis RICHARD L. SCHMALENSEE, Sloan School of Management, Massachusetts Institute of Technology ANDREW WHITE, Acting Director

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop Acknowledgments The Committee to Review the Social Security Administration's Disability Decision Process Research (the committee) acknowledges with appreciation the many people who participated in the Workshop on Survey Measurement of Work Disability, including those who prepared papers for presentation, those who served as formal discussants, and the many others who contributed to the lively and informative discussions at the workshop. Support for the study was provided by the Social Security Administration. We particularly wish to thank Scott Muller and Rosanne Hanratty who serve as government project officers for the study. They provided valuable support for the workshop. We gratefully acknowledge Nancy Mathiowetz of the Joint Program in Survey Methodology, University of Maryland, who served as consultant for planning, organizing, and coediting the summary of the workshop. We acknowledge with gratitude the commitment and support of the committee staff in organizing the workshop and preparing the report. Gooloo Wunderlich, Study Director, and Nancy Mathiowetz not only undertook the major responsibility for the workshop, but also prepared the report. Kathleen Nolan worked closely with the study director and the consultant in organizing the workshop, developing the agenda, and preparing the charts and formatting tables for publication. Rebecca Lucchese, Senior Project Assistant, assisted in the logistical and administrative arrangements of the workshop. Many thanks go to Nicole Amado, Senior Project Assistant for cheerfully and competently reviewing the drafts, and making editorial corrections to the entire report, and preparing it for publication under tight deadlines. The chair thanks the committee members for their time and commitment to the workshop.

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop REVIEWERS The report was reviewed by individuals chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments to assist the authors and the National Academy of Sciences in making the 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 content of the review comments and the draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their participation in the report review process: Edward Brandt, Jr., University of Oklahoma, David Keer, National Institute on Disability and Rehabilitation; Cille Kennedy, National Institute of Mental Health; Mary Grace Kovar, National Opinion Research Center; Janet Norwood, Urban Institute; and Edward Perrin, University of Washington. While the individuals listed above provided many constructive comments and suggestions, responsibility for the final content of the report rests solely with the authoring committee and the National Academy of Sciences. Dorothy P. Rice Chair

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop Contents  1   INTRODUCTION   1      Objectives and Focus of the Workshop,   3  2   CONCEPTUAL ISSUES IN THE MEASUREMENT OF WORK DISABILITY   4      The Concept of Disability,   5      The Concept of Social Roles,   14      Directionality and the Dynamic Nature of Disability,   18      How Disablement Concepts Differ from Quality of Life and Similar Concepts,   18      Conceptual Issues Related to the Measurement of Work Disability,   20      Direct Assessment of Work Disability,   24      Conclusion,   27  3   METHODOLOGICAL ISSUES IN THE MEASUREMENT OF WORK DISABILITY   28      Background,   29      Sources of Error in the Survey Process: The Survey Research Perspective,   30      Measurement Error: The Psychometric Perspective,   37      Potential Sources of Measurement Error Specific to Persons with Disabilities,   38      Empirical Evidence Concerning Measurement of Disability Error,   42      Question Wording Issues Related to Selected Measures of Work Disability,   50      Implications for Methodological Research,   52

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop  4   SUMMARY OF WORKSHOP DISCUSSIONS   53      Methodological Research on Survey Measurement of Disability,   53      Implications of Different Concepts for Survey Measurement,   56      Sampling, Accessing, and Measuring People with Disabilities,   58      Questionnaire Development Issues for Measures of Work Disability,   60      Role of Environment in Survey Measurement of Disability,   62  5   AN AGENDA FOR RESEARCH IN SURVEY MEASUREMENT OF WORK DISABILITY   64      Coverage Error,   65      Measurement Error,   66      Nonresponse,   68      Measures of the Environment,   69      Summary,   71     REFERENCES   73     APPENDIXES    A   Study Mandate,   77  B   Workshop Agenda,   78  C   List of Participants,   82     ACRONYMS AND ABBREVIATIONS   91     BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS   93

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SURVEY MEASUREMENT OF WORK DISABILITY: Summary of a Workshop SURVEY MEASUREMENT OF WORK DISABILITY

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