Improving the Measurement of Late-Life Disability in Population Surveys Beyond ADLs and IADLs: Summary of a Workshop (2009) / Chapter Skim
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Appendix A: Population Survey Measures of Functioning: Strengths and Weaknesses--Barbara M. Altman
Appendix A: Population Survey Measures of Functioning: Strengths and Weaknesses--Barbara M. Altman
Pages 99-156
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From page 99... ...
The history of the involvement of many disciplines in the development of policy and programs to address disability issues -- medicine, education, social work, psychology, sociology, vocational counseling, occupational and physical therapy, and others -- sets the stage for attempts at conceptual distinctions to delineate measures of the disability process (Nagi, 1991)
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From page 100... ...
Second, I define and locate the source and types of measurement for the variety of theoretical concepts associated with the disability process. Finally, I reintroduce the important contribution of the social and environmental context not only to the conceptualization of disability, but also to its measurement.
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From page 101... ...
Moving the theoretical models beyond the medical context laid the groundwork for also moving the data collection about the process into a social survey context. The expanded 1996 Medical Expenditure Panel Survey and the 1994–1995 National Health Interview Survey on Disability (NHIS-D)
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Functional Limitations B Nagi model as adapted by Altman FIGURE A-1 Two versions of Nagi model.
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Functioning reflects assessment of ability or capacity in the general situation, whereas behavior is the manifestation of the actual interaction that creates disability. While functioning in basic actions, such as walking or seeing, is an important component of the equation at the person level, functioning in the area of a more complex activity, such as working, focuses on the outcome of the person–environment interaction.
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From page 104... ...
. The 1997 IOM model depicted in Figures A-2 and A-3 follows the Nagi model concepts closely in the areas of pathology, impairment, and functional limitation and collapses some of the Verbrugge and Jette elements of intra- and extra-individual factors into the quality-of-life components (Verbrugge and Jette, 1994)
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APPENDIX A 105 The Enabling–Disabling Process Transitional Factors Biology Environment (Physical and Lifestyle and Social/ Behavior Psychological) No Functional Disabling Pathology Impairment Limitation Condition Quality of Life FIGURE A-2 Second Institute of Medicine model.
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Physical Environment Social Environment DISABILITY ENVIRONMENT The strength/resilience of the flexible mat (environment) is a function of social support, culture, physical barriers, assistive technology, etc.
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The ICF model, which has received international support, also provides a taxonomy for classifying function, disability, and health with standard Health Condition (disorder or disease) Body Functions and Structure Activity Participation Environmental Personal Factors Factors FIGURE A-4 ICF model.
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From page 108... ...
Although the Nagi and IOM concepts of functioning are directed more specifically at the whole person's basic actions than is the ICF, the Nagi concept of "disability" and the IOM concept of "disablement" are less specific and much more open to a wide range of possible interpretations from a measurement point of view. Environment in all three models is expressed in very broad brushstrokes, with emphasis in the Nagi model on the interaction with significant others or role sets; in the IOM model on physical modifications Role set refers to the persons most commonly found to interact with an individual in specific role situations, so in the family situation the role set includes a spouse and children or parents, whereas in an employment situation a role set includes employers and colleagues or coworkers.
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The pathology or condition is a health problem, an injury, or a congenital defect. It is the focus of diagnosis and treatment in the medical context.
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and the IOM model, both the pathology and the impairment are located at the person level. In the ICF model, health or disease is presented as an intervening variable, and body function and structure represent the impairment and its location as the link with the International Classification of Disease.
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From page 111... ...
It does not separate the physical, cognitive, and emotional functioning from the tasks that require such individual functioning to be accomplished. The Nagi idea of individual functioning can be considered to be captured in the activity conceptualization of the ICF model, but the activity concept includes much more as well.
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From page 112... ...
in which the cultural expectations of the role and the nature of the physical environment affect the person, forcing modifications in behavior in order to adjust to the situation. In Nagi's version, the meaning of disability is "a pattern of behavior that evolves in situations of long term or continued impairments that are associated with functional limitations" (Nagi, 1965, p.
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From page 113... ...
In a survey context, if the source of information is either a person or a representative proxy and one is unable to observe the situation of the interaction, few alternatives are left. One can take a functioning approach that indicates how much difficulty a person has in a specific role situation (similar to assessing the limitation in basic actions)
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From page 114... ...
Purpose of Measurement Another important background consideration related to the choice of concepts to operationalize during data collection is the purpose of the data collection, that is, what aspect of disability is the focus of concern. Because the data collected in national surveys are dictated by the orientation of the agency collecting the data -- labor, health, or aging -- the expertise of the agency colors and influences exactly what data are included and excluded and what aspects of the disablement process are seen as primary.
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However, to understand the mechanisms involved that facilitate or restrict the level of participation for an individual with impairments and concomitant functioning limitations, we must step back from measuring at the level of participation and focus on anyone who exhibits functional limitations (Madans et al., 2004)
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If there is enough space to ask about a range of basic actions, such as walking, lifting, seeing, hearing, and communicating, there probably is not enough space FIGURE A-8 Moving from concept to question using functioning as an example. Figure A-8 new, fixed image
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. In understanding the Nagi, IOM, and ICF models, we recognize that communication is an area of functioning that is important to a person's participation in the role interactions that make up human existence.
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in body structure, body functions and physiological structures, activity function (including and participation. mental function)
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interaction between Depicted as a three the person and the dimensional mat environment Difficulties an An umbrella term Problems an All aspects of the individual may have for impairments, individual may external or extrinsic in executing task or activity limitations experience in world that form action. It represents and participation involvement in the context of an the individual restrictions.
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From page 120... ...
Types or Levels of Measurement Figure A-9 shows the variety of levels of measurement that can provide information about disability or activities and participation, depending on the model being used by a researcher. Unlike impairment or body structure and function categories, which can be represented as present or not present and expanded by an indication of the level of severity when the problem is present, the diversity of human activity is much more difficult to capture than a physical attribute and exists at several levels of complexity.
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From page 121... ...
(Nagi) Restriction Environment Includes actions Household, work, Includes tasks Social and physical as well as a range civic, or community associated with contexts in all social of tasks, from tasks performed in specific major role situations, including simple walking to all the social roles designations, such built structure, more complicated in which a person as education, work, organizational policies activities, like using can participate, or community and structure, cultural transportation including spouse, membership laws and norms parent, worker, citizen, congregation member, friend All types of mobility, Behaviors or Performance of Assistive devices, communication, functioning tasks required to home characteristics, learning, self-care associated with engage in school, transportation tasks, domestic self-care, working, work, or economic, characteristics, tasks, relationships maintaining a civic, or community building household, family venues characteristics, climate roles, or civic roles and topography Physical functioning, Self-care, household Involvement in or Assistive device self-care, and tasks, work, and limitation in school use; household domestic tasks leisure activity or work characteristics represented in survey data by self-report of a physician's diagnosis, there are extensive sets of questions and a variety of approaches to questions that reflect the hierarchy of complexity associated with the disability process.
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From page 122... ...
So for example, an individual would use what body functions and intellectual capacity are available to him or her in order to dress to go out or to prepare a meal. The most complicated level of mobility for an individual is involvement in an organized activity, focused on combining basic individual actions with multiple tasks in order to accomplish one or more activities associated with a specific role.
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From page 123... ...
Whether the basic actions or the tasks are carried out with the aid of assistive devices or accomplished in an unusual way (using one's feet instead of hands) is irrelevant to the measurement of that element of participation; however, such detail may provide additional information on the person's functioning or the environmental context.
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From page 124... ...
Theoretical Concepts Represented in Survey Questions Medical and Chronic Conditions Although the theoretical models of disability are careful to identify and differentiate the concepts of pathology and impairments in the context of health, disease, injury, and congenital anomaly, the survey approach to identifying that element of disability consistently focuses on either identifying a specific health condition or framing questions about other conceptual areas in the context of a physical, mental, or emotional health problem. Except for some questions included in the Women's Health and Aging The Social Security Administration used questions of this nature in a series of surveys in 1972 and 1974.
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Hearing X [2] Emotional functioningg X [7]
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Nagi functioning questions X [8]
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SIPP -- 2004 Household sample Nagi functioning questionsp X [17] General ADLs -- difficulty X [7]
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aBasic actions represent deliberate willful functioning of the whole person. bDisability as it is described in Nagi as behavior that develops over a period in a situation of long-term impairment associated with functional limitation within the individual's social and physical environment.
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rThere is also a question that asks about the presence of five different types of conditions that can cause mental health or cognitive problems. sSurvey contains three questions that could be interpreted to represent emotional functioning associated with getting along with people, ability to concentrate, and coping with stress that interferes with everyday activities.
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Hearing X [4] Cognitive functioningf X [test]
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Treatment relatedm Emotional functioning X [5] Nagi functioning questions X [8]
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WHAS -- 1995 Screener Nagi functioning questions -- any difficulty X [5] Nagi functioning questions -- how much difficulty X [5]
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Sampled persons Nagi functioning questions X [8] Start date/main condition cause X [8]
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bDisability as it is described in Nagi as behavior that develops over a period in a situation of long-term impairment associated with functional limitation within the individual's social and physical environment. The disability is not the functioning, but the behavior that evolves.
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Surveys with links to administrative data -- such as Medicare records in the National Health Interview Survey (NHIS) or physician follow-back for a subsample of the Medical Expenditures Panel Survey (MEPS)
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Cognitive and Emotional Functioning Other elements of functioning that the surveys attempt to capture are cognitive functioning, predominantly the ability to remember; mental health status, which is assumed to provide some insight into emotional functioning; and sensory functioning -- seeing and hearing. Most of the general national surveys are limited to one question about cognitive functioning.
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From page 137... ...
The actual problems created by those symptoms, such as with decision making, safety, emotional control, or withdrawal, and the level of those problems are simply assumed on the basis of the level of symptomatology. At this time, understanding of how to measure emotional functioning lags behind measurement of other capacities.
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From page 138... ...
Among the general national surveys, only SIPP has multiple questions on ADLs and IADLs; the other general surveys have fewer questions and much less detail. The aging surveys, in contrast, ask a minimum of five questions about self-care and at least five questions about instrumental activities, such as making a meal, shopping, or managing medications or money.
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From page 139... ...
Levels of Measurement The dominant levels of measurement of functioning found in the surveys I reviewed are level 1 and level 2, measures of basic actions or functioning of the person and measures of specific tasks, primarily those associated with self-care and independence. Although the question included in most IADL measures on going shopping can be considered a question about organized activity, there is very little detail considered other than accomplishing the task.
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From page 140... ...
The concept of impairment was still included within illness and not explored as a precursor to "disability." Observing the current set of surveys from these earlier vantage points, the data available in the surveys reviewed here have broadened to encompass representation of almost all areas of the more recent conceptualizations of disability and include impressive detail about individual functioning, in most instances, as well as information about maintaining independence, using help, and maintaining social ties. Of the two forms of surveys reviewed here, general national surveys and specialized aging surveys, each group has important strengths.
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From page 141... ...
It would provide an approach that captures the nature of the change in role behavior and would be more useful for measuring the social, cultural, and physical environmental elements that are related to behavior changes. The information from the aging surveys (and SIPP to a more limited extent)
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From page 142... ...
There are also very limited measurements of work roles and social role functioning. Given the emphasis on a functioning limitation evaluation of role participation rather than an examination of role behavior and how it might have changed since the onset of functional limitations associated with health problems, there is very little information about the disablement process.
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From page 143... ...
The prevalence estimates and percentages in Table A-4, taken from a recent chartbook about disability and health, show those striking differences. Taken together, the combined measures of disability available in NHIS identify more than 66 million adults or 31.4 percent of the TABLE A-4 Population Estimates Based on Concepts Used to Measure Disability, Total Adult Population, and Population Ages 65 and Over Population Estimate Population Estimate Disability Measure All Adultsa Percent Ages 65+b Percent Total 211,133,000 100.0 33,061,000 100.0 Any limitation measure 66,317,000 31.4 15,692,000 47.5 Basic action 62,338,000 29.5 -- -- Difficultyc Movement difficulty 45,903,000 21.7 11,448,000 34.6 Sensory difficulty 27,655,000 13.1 3,892,000 11.8 Cognitive difficultyd 5,876,000 2.8 -- -- Emotional difficultye 6,487,000 3.1 692,000 2.1 Role Participation 30,097,000 14.3 -- -- Self-care 8,738,000 4.1 ADLs: 2,002,000 6.1 ADLs and IADLs IADLs: 4,008,000 12.1 Social role limitation 14,599,000 6.9 -- -- Work limitation 24,548,000 11.6 8,110,000 24.5 aDatafrom Altman and Bernstein (2008)
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A little less than half of the total population identified by limitations in basic actions were identified by the other commonly used measures, task or role limitation: 30 million (14.3 percent) reported a limitation in selfcare, work, or social roles.
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For the remaining articles that do not use an ADL-IADL construct to represent disability, one uses a work limitation question, one uses a summed indicator of limitations in eight basic actions (also known as Nagi questions) , and the final one uses the short form SF-36 on physical functioning and pain.
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From page 146... ...
(2008) basic actions NOTE: EPESE = Established Populations for Epidemiologic Studies of the Elderly, HRS = Health and Retirement Study, NHIS = National Health Interview Study, NHIS-D = National Health Interview Study on Disability, NLTCS = National Long-Term Care Survey.
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From page 147... ...
disability to predict active life expectancy Conditions, depressive symptoms Used as dependent variable -- predicting changes associated with age and gender None Dependent variable predicted in part by previous subclinical status None Trend of transition into and out of disabled status Also used chronic condition list Used as independent variable to predict physical activity Health conditions -- list Dependent variable associated with poverty and Condition limits activity in any way family stress Depressive symptoms and medical Used as independent variable to predict weight comorbidity based on conditions changes aIt is not indicated in the paper if the ADL/IADL measure is taken from the functioning questions about difficulties or the behavioral question about needing help. bMeasures are not organized on any theoretical structure but are based on Katz, Rostow, and Nagi measures.
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From page 148... ...
As with the examination of the data elements of the commonly used surveys in Tables A-2 and A-3, the literature reviewed hints at an even narrower use of the data for research purposes. Available environmental elements are used in only one of the articles, and that article focuses on tracking the use of assistive devices.
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From page 149... ...
183) have noted that the "field of disability research is in need of uniform concepts and a common language to guide scholarly discussion, to advance theoretical work on the disablement process, to facilitate future survey and epidemiological research and to enhance understanding of disability on the part of professionals as well as the general public." I strongly agree and would add that the field also needs some expansion of measurement to cover all the conceptual components of our theories, as well as coordination of measures that represent those theoretical concepts.
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From page 150... ...
Studying the problems of disability from a role participation perspective would move away from that health focus and contribute to the overall understanding of the aging process over the life-cycle. Expanding survey measurement to include a fuller, more robust coverage of functioning in basic actions, indicators of organized activity participation meaningful to role participation, and measures of key environmental factors would facilitate the study of disability across all age groups.
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From page 151... ...
It is distinct from body functions (ICF) , which are "physiological functions of body systems" rather than functions of the whole person.
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From page 152... ...
Role participation -- Represents the accomplishment, through willful actions, specific tasks and organized activities, of enough elements of a social role to claim that form of role participation as represented in a particular culture or society. Current Questions and Suggested Additions National Health and Nutrition Examination Survey In a typical week, how many times do you talk on the telephone with family, friends or neighbors?
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From page 153... ...
Suggested additions would be similar to those suggested above. The operative element being to discover if this activity represents a change from the activity level or type of activity experienced before the functional limitations began to be noticeable.
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Barnartt (Eds.) , International Views on Disability Measures: Mov ing Toward Comparative Measurement (pp.
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. A Guide to Disability Statistics from the National Health Interview Survey.
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From page 156... ...
(National Health Interview Survey.) Washington, DC: U.S.
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