Review of Disability Evaluation Study Design

Third Interim Report

Gooloo S. Wunderlich and William D. Kalsbeek, 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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Review of Disability Evaluation Study Design: Third Interim Report Review of Disability Evaluation Study Design Third Interim Report Gooloo S. Wunderlich and William D. Kalsbeek, 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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Review of Disability Evaluation Study Design: Third Interim Report NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 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. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is President of the Institute of Medicine. 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 0-309-06830-4 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 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 1999 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Review of Disability Evaluation Study Design: Third Interim Report 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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Review of Disability Evaluation Study Design: Third Interim Report 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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Review of Disability Evaluation Study Design: Third Interim Report 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 MIRON L. STRAF, Director (on leave) ANDREW WHITE, Acting Director

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Review of Disability Evaluation Study Design: Third Interim Report REVIEWERS 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 NRC's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution 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 review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their participation in the review of this report: NORMAN BRADBURN, Senior Vice President for Research of the National Opinion Research Center (NORC), University of Chicago JOAN LEON, Private Consultant, Berkeley, California RODERICK J. A. LITTLE, Chair, Department of Biostatistics, University of Michigan EDWARD B. PERRIN, Professor Emeritus, University of Washington SEYMOUR SUDMAN, Professor, University of Illinois-Urbana While the individuals listed above have provided constructive comments and suggestions, it must be emphasized that responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Review of Disability Evaluation Study Design: Third Interim Report Contents 1   INTRODUCTION   1 2   OVERVIEW OF THE DISABILITY EVALUATION STUDY   3     Study Design   4     Pilot Study Design   9 3   COMMITTEE REACTIONS   12     Pilot Study   13     Performance of the Initial Screener and Achievement of Target Sample Sizes   15     Medical Examination Schedule   16     Proxy Respondents   17     Questionnaire and Procedures Issues   17     Summary   19 4   CONCLUDING COMMENTS   22     REFERENCES   23 APPENDIX:   Review of the Social Security Administration's Disability Decision Process Research: Study Mandate   25     ACRONYMS AND ABBREVIATIONS   26     BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS   27

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