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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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.
www.nap.edu
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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 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 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 Statistics and Committee on Population. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and 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 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. 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 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. 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 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. Harvey V. Fineberg 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. 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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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
Acknowledgments
This 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 Social 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 leadership 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 committee, 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-
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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 comments 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 Epidemiology, College of Public Health, University of Iowa.
Although the reviewers listed above provided many constructive comments 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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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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
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Improving the Measurement of Late-Life Disability in Population Surveys: Beyond ADLs and IADLs - Summary of a Workshop
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
Barbara M. Altman
99
B
Workshop Agenda and Presenters
157
C
Biographical Sketches of Steering Committee Members
163
