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III STEP Series |
AM Jette, PT, PhD, FAPTA, is Director, Health and Disability Research Institute, Boston University, 53 Bay State Rd, Boston, MA 02215 (USA)
(ajette{at}bu.edu)
Submitted June 24, 2005;
Accepted December 12, 2005
| Abstract |
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Key Words: Health status Measurement: applied Outcome assessment (health care) Physical disability Professional issues
| Introduction |
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Conceptual frameworks, such as the disablement model, provide a rudimentary language that helps guide our communication, clinical research, and patient care. As stated in the Guide to Physical Therapist Practice:
... the disablement model is used to delineate the consequences of disease and injury both at the level of the person and at the level of society. The disablement model provides the conceptual basis for all elements of patient/client management that are provided by physical therapists.2(p27)
In this perspective, I will provide an update on the changing language of disablement. I will review selected contemporary disablement frameworks and the definitions and terms being used to address common disablement concepts, and I will discuss some of the future challenges that need to be addressed to achieve a universal disablement language for discussing physical therapy research and clinical interventions.
| Contemporary Disablement Frameworks |
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In contrast, the social model of disability views the phenomenon of disability as a socially created problem and not as an attribute of the person. In the social model of disability, the underlying problem is created by an unaccommodating or inflexible environment brought about by the attitudes or features of the social and physical environment itself, which calls for a political response or solution.6
Finally, the third conceptual approach for examining the concept of disability, called the biopsychosocial model, attempts to integrate the medical and social models of disability.9 In the biopsychosocial model, disability is viewed as a consequence of biological, personal, and social forces. The interactions among these various factors result in disablement. The biopsychosocial model of disability represents the dominant perspective behind contemporary disablement frameworks in use today.
In this perspective, I will compare and contrast 2 contemporary disablement frameworks and elaborations of each that have received widespread circulation and use within the rehabilitation and related fields. The first is the disablement model developed by Nagi. The second is the International Classification of Impairments, Disabilities, and Handicaps (ICIDH)10 and its most current version, referred to as the International Classification of Functioning, Disability and Health(ICF).11
| The Disablement Model |
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For Nagi, active pathology involves the interruption of normal cellular processes and the simultaneous homeostatic efforts of the organism to regain a normal state. He notes that active pathology can result from infection, trauma, metabolic imbalance, degenerative disease processes, or another etiology. Examples of active pathology are the cellular disturbances consistent with disease processes such as osteoarthritis, cardiomyopathy, and cerebrovascular accidents.
For Nagi, impairment refers to a loss or abnormality at the tissue, organ, and body system level. Active pathology usually results in some type of impairment, but not all impairments are associated with active pathology (eg, congenital loss or residual impairments resulting from trauma). Impairments can occur in the primary location of the underlying pathology (eg, muscle weakness around an osteoarthritic knee joint), but they may also occur in secondary locations (eg, cardiopulmonary deconditioning secondary to inactivity).
At the level of the individual, Nagi uses the term functional limitations to represent restrictions in the performance of the person. An example of functional limitations that might result from arthritis could include limitations in the performance of tasks such as the persons ability to walk or his or her ability to transfer from a sitting to a standing position. These functional limitations might or might not be related to specific impairments secondary to arthritis and thus are seen as distinct from disturbances of the organ or body systems.
According to Nagis disablement model, disability is the expression of a physical or a mental limitation in a social context. Nagi viewed the concept of disability as representing the gap between a persons intrinsic capabilities and the demands created by the social and physical environmenta product of the interaction of the individual with the environment.3,12,13 This is a fundamental characteristic of Nagis thinking that is consistent with the biopsychosocial school of thought.
According to Nagis own words:
[Disability is a] limitation in performing socially defined roles and tasks expected of an individual within a sociocultural and physical environment. These roles and tasks are organized in spheres of life activities such as those of the family or other interpersonal relations; work, employment, and other economic pursuits; and education, recreation, and self-care. Not all impairments or functional limitations precipitate disability, and similar patterns of disability may result from different types of impairments and limitations in function. Furthermore, identical types of impairments and similar functional limitations may result in different patterns of disability. Several other factors contribute to shaping the dimensions and severity of disability. These include (a) the individuals definition of the situation and reactions, which at times compound the limitations; (b) the definition of the situation by others, and their reactions and expectationsespecially those who are significant in the lives of the person with the disabling condition (e.g., family members, friends and associates, employers and co-workers, and organizations and professions that provide services and benefits); and (c) characteristics of the environment and the degree to which it is free from, or encumbered with, physical and sociocultural barriers.13(p315)
Nagis definition stipulates that a disability may or may not result from the interaction of an individuals physical or mental limitations with the social and physical factors in the individuals environment. In Nagis terms, the physical impairments of a person with arthritis, for example, would not invariably lead to a disability. For example, 2 patients with rheumatoid arthritis may present with a very similar clinical profile. Both may have moderate impairments such as restricted range of motion and muscle weakness. Their pattern of function also may be similar, with a slow, painful gait and difficulty grasping objects.
Their disability profile, however, may be radically different. One individual may restrict or eliminate his or her outside activities, require help with all self-care activities, spend most of the time indoors watching television, and be unemployed and depressed. The other may fully engage in his or her social life, receive some assistance from a spouse in performing daily activities when needed, be driven to work, and be able to maintain full-time employment through workplace modification. Two patients with very similar underlying pathology, impairments, and functional limitations may present very different disability profiles. Furthermore, similar patterns of disability may result from different types of health conditions.
| Elaboration of the Disablement Model |
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Nagis concept of disability and the elaboration by Verbrugge and Jette defines disability as a broad range of role behaviors that are relevant in most peoples daily lives. Five commonly applied dimensions of disability evolved from this line of scientific inquiry:
This elaboration of the disability concept highlights the varied nature of role task behavior, from fairly basic self-care activities to advanced and complex social, work, and leisure activities.
Verbrugge and Jette attempted to differentiate the "main pathways" of the disablement process (ie, Nagis original concepts) from factors hypothesized or known to influence the ongoing process of disablement. From a social epidemiologic perspective, Verbrugge and Jette argued that one might analyze and explain disablement relative to 3 sets of variables: predisposing risk factors, intra-individual factors, and extra-individual factors.14 These categories of variables, which are external to the main disablement pathway, can be defined as follows:
Verbrugge and Jette14 hypothesized that risk factors along with intra- and extra-individual factors mediate or moderate the relations among pathology, impairment, functional limitation, and disability. The intricate interrelations of these factors within the disablement process have been an active area of research over the past decade.1520
A further elaboration of Nagis conceptual view of disability is contained in Pope and Tarlovs Disability in America.13 The 1991 Institute of Medicine (IOM) report uses the original main disablement pathways put forth by Nagi with minor modification of his original definitions. The IOM report provides 2 important additions to the disablement model: the concepts of secondary conditions and quality of life, both of which are discussed later in this perspective. In an effort to emphasize Nagis view that disability is not inherent in the individual but rather is the result of the interaction of the individual with the environment, the IOM issued another report, titled Enabling America,21 where they referred to disablement as the "enabling-disabling process." This effort was an explicit attempt to acknowledge, within the disablement model itself, that disabling conditions not only develop and progress but they can be reversed through the application of rehabilitation and other forms of explicit intervention.
| International Classification of Impairments, Disabilities, and Handicaps (ICIDH) |
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Existing disablement frameworks such as the Nagi disablement model and the ICIDH have received both positive and negative reviews in the literature.13,25,26 Although they have stimulated useful discussions of disability concepts and have been used around the world, the absence of a universally accepted conceptual scheme to describe and classify disablement has led to confusion within the scientific literature.14 Different terms have been invented and measured in a myriad of ways; and similar terms, such as disability, impairment, and function, have been given various and overlapping meanings. This makes comparisons across studies and over time extremely problematic and hampers clear communication and discussion in clinical as well as research contexts.
| International Classification of Functioning, Disability and Health (ICF) |
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The ICF identifies 3 levels of human function: functioning at the level of body or body parts, the whole person, and the whole person in their complete environment. These levels, in turn, contain 3 domains of human function: body functions and structures, activities, and participation. The term disability is used to denote a decrement at each level (ie, impairment, an activity limitation, and a participation restriction).
The first domain of the ICF model is body functions and structures, which are defined as follows:
In the context of health experience, body functions are the physiological functions of body systems (including psychological functions). Body structures are anatomical parts of the body such as organs, limbs, and their components. Impairments are problems in body function or structure as a significant deviation or loss. Impairments within the ICF include deviations from generally accepted population standards in the biomedical status of the body and its function and can be temporary or permanent.11
The ICF defines the activityand participation domains as follows:
In the context of health experience, Activity is the execution of a task or action by an individual. Activity limitations are defined as difficulties an individual may have in executing activities.11Participationis involvement in a life situation while participation restrictions are problems an individual may experience in involvement in life situations.11
The ICF framework is illustrated in the Figure.
The main concepts included within the Nagi and ICF models are strikingly similar although the terms used to represent them are quite different. The Table
summarizes and compares the basic disablement concepts and their definitions as presented in both formulations.
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For the ICF framework to capture descriptive information about functioning and disability in each subdomain, the framework uses qualifiers that identify the presence and severity of a decrease in functioning at each domain of the ICF (ie, body function, activity, or participation). In the domain of body function and structure, for instance, the primary qualifier is the presence and degree or severity of a specific impairment. A 5-point scale is used to record the severity of impairment as: no, mild, moderate, or severe impairment (the scale includes a code 8 [not specified] and code 9 [not applicable]).
Within the activity and performance domains, the ICF advocates the use of qualifiers to assess performance or capacity. A performance qualifier should be used to describe what a person does in his or her current environment, including whether assistive devices or other accommodations may be used to perform actions or tasks and whether barriers exist in the persons actual environment. Capacity qualifiers, on the other hand, should be used to describe a persons inherent ability to execute a task or an action in a specified context at a given moment. The capacity qualifier identifies the highest probable level of functioning of a person in a given ICF domain in a standardized environment without the use of specific assistance or accommodations. In essence, the performance qualifiers capture what people actually do in their normal environments, whereas the capacity qualifier describes the persons inherent ability to function without specific environmental impact. The gap between capacity and performance reflects the difference between the impacts of current and uniform environments as well as personal factors, the second part of the ICF framework.
Steiner et al27 have recently described the potential utility of the ICF framework as a clinical problem-solving tool for rehabilitation clinical care. In their article, they provide a useful example of a female patient with reactive arthritis and chronic pain, and they use the ICF framework to help a clinician understand the patients functioning and disability related to her condition. In the domain of body functions and structure, this patient is described as reporting neck pain, as well as pain in her hands and feet, along with chronic fatigue. Impairment qualifiers are used to describe her joint impairment and fatigue as moderately severe. In the domains of activity and participation, her impairments prevent her from participating in leisure clubs that she had been active in the past and she reports difficulty writing and in performing household activities that involve lifting and carrying objects with her hands. Walking long distances has become almost impossible for her because of her hand and feet impairments, preventing her from joining her husband on his walks. Above all she was described as anxious about losing her job as a nurse that would lead to further financial dependency on her husband. For each identified activity limitation and participation restriction, the ICF calls for the application of qualifiers to further define the capacity or performance although these qualifications are not included in the article. Steiner et al27 note the challenge in finding ways to operationally define qualifiers of both capacity and performance. The development and use of standardized assessment instruments to qualify degree of activity limitations and participation restrictions has become an active area of ongoing research.2830 Its application in specific clinical areas also has been investigated.3133
The ICF framework includes 2 contextual factors: environmental and personal factors. Environmental factors are defined in the ICF framework as the physical, social, and attitudinal environment in which people live and conduct their lives. The subdomains included within the domain of environment include: products and technology; natural environment and human-made changes to the environment; support and relationships; attitudes; and services, systems, and policies. The environmental factors classification, once operationally defined, can be used to identify specific features of the persons actual environment that act to facilitate or hinder a persons level of function and disability. It also can be used to standardize specific testing environments where capacity in activity and participation can be assessed.
Personal factors are the particular background of an individuals life and living, and are composed of features of the individual that are not part of a health condition or health states. Personal factors can include sex, race, age, health conditions, fitness, lifestyle, habits, upbringing, coping styles, social background, past and current experience, character style, as well as other psychological assets. Although environmental factors have been elaborated upon within the ICF framework to facilitate their classification, personal factors have not.
The early disablement frameworks such as Nagis and the ICIDH formulation presented the disablement process as a linear progression of response to illness or consequence of disease.3,10,13 One consequence of this traditional view is that disabling conditions have been viewed as static entities.34 This traditional, early view of disablement failed to recognize that disablement is more often a dynamic process that can fluctuate in breadth and severity across the life course. It is anything but static or unidirectional.
More recent disablement formulations or elaborations of earlier models have explicitly acknowledged that the disablement process is far more complex.11,14,21,35,36 These more recent authors all note that a given disablement process may lead to further downward spiraling consequences. These consequences of a given disabling conditioncalled "secondary conditions,"37 which may involve pathology, impairments, further limitations in function, or disabilityhave been explicitly incorporated into the graphic illustrations of more recent disablement formulations. Commonly reported secondary conditions include pressure sores, contractures, depression, and urinary tract infections, but it should be understood that they can be a pathology, an impairment, a functional limitation, or an additional disability.34
Little is known about the etiology of secondary conditions as they relate to disablement and their consequences. Longitudinal analytic techniques now exist to incorporate secondary conditions into research models and are beginning to be used in epidemiologic disablement investigations.15 Much more research is needed in this area.
| Implications for Physical Therapy Research |
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Nonetheless, challenges around the measurement of ICF concepts need to be resolved if the formulation is to succeed as an international standard that can be used by researchers, clinicians, and governmental and regulatory bodies, as well as in other applications.
One of the intents of the ICF is to provide a scientific basis for understanding and studying health and health-related states, outcomes, and determinants.11 For scientific investigation, a crucial aspect of any conceptual framework is its internal coherence and its ability to differentiate clearly among concepts and categories within the framework.39 Without empirical differentiation, conceptual frameworks cannot be investigated and validated. One of the frequent criticisms of the original ICIDH was that it was difficult to identify and measure the boundaries between the basic concepts; each lacked the clarity and distinctness necessary for useful empirical testing.10,4044 For the ICF to be truly useful as a framework for research, it is critical that the classification contain distinct and measurable domains and subdomains. Without distinct and measurable domains, researchers will have trouble using the ICF for measurement construction and research applications, as well as in professional communication and in the clinic.
In the ICF manual, the WHO has acknowledged that, "It is difficult to distinguish between Activities and Participation on the basis of the domains in the Activities and Participation component."11(p16) Nevertheless, differentiation among ICF concepts and the ability to measure each clearly and distinctly is essential if the ICF is to achieve acceptance by individuals, organizations, and associations as an international classification of human functioning and disability. Researchers are beginning to examine the boundaries of the activity and participation domains of the ICF. In our research group, for example, we have been able to identify the existence of individual and distinct constructs of activity and participation that can be measured using self-report instruments.45,46 In one sample of older adults, for example, our analyses revealed 2 distinct activity subdomains with content parallel to the subdomains included within the ICF handbook.47 We labeled one "basic mobility" and the other "daily activities," and they correspond to the "domestic life" and "self care" subdomains of the ICF.11 In addition, a distinct "social/role participation" subdomain emerged from our analyses, which corresponds to the "interpersonal interactions" subdomain of the ICF.11 Both activity subdomains were more highly correlated with each other than with the participation domain, providing further support for our interpretation of distinct activity and participation constructs. Internal consistency of each scale was very high.
It may be useful to reflect on what differentiates the content of the activity and participation domains of the ICF as revealed in our research.47 In our work on measuring disablement concepts, the activities domains have been made operational using relatively simple tasks or activities (eg, use common utensils) that an adult encounters on a frequent if not daily basis.48 In addition, the measurement scales used for the activity domain items focused on the ability or capacity of a person to perform each specific task or action, or their perceived difficulty in performing each task. Activity items did not address whether people were limited in performing them in the context of their normal daily life. In contrast, the participation domain has been defined as the limitation the person did encounter in the performance of more complex life roles. The roles contained within the participation domain refer to much more complex categories of life activities (eg, provide meals) compared with activity domain items that can be accomplished using a variety of tasks or component actions.49 This content distinction is very consistent with the differentiation made between the functional limitations and disability domains outlined within the Nagi and ICF disablement frameworks.
| Summary |
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| Footnotes |
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This article is based on a presentation at the III STEP Symposium on Translating Evidence Into Practice: Linking Movement Science and Intervention; July 1521, 2005; Salt Lake City, Utah.
| References |
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