Washington, D.C.
The Subcommittee on Populations of the National Committee on Vital and Health Statistics held a public meeting on April 13-14, 2000, at the Hubert H. Humphrey Building, Washington, D.C. Present:
Absent:
The Subcommittee on Populations conducted a meeting on April 13-14, 2000, to focus on the feasibility, appropriateness, value of, and potential problems with, ICIDH codes to provide information about functional status in administrative transactions within the health care setting.
Donald Lollar, Ed.D., CDC, identified problems with reliability and validity of data related to participation or environment codes. He described the ICIDH as a companion document to ICD that discusses the associations of disease injury at the body system, personal, and society levels. A focus on the personal element in society, rather than an environmental concept, is the norm. The closest element in the ICIDH to a framework that approximates functional status in health care settings is activity limitations on personal-level activities.
Dr. Lollar asserted that the problems associated with providers omitting functional status from their notes must be addressed globally in training programs for all health care professionals. Funding is available for a pilot effort.
Dr. Lollar made suggested ways to improve the format of the coding. He noted that back coding will be required—and possible—with other instruments, such as OASIS and Minimal Data Set. Mapping can facilitate a more defined reporting of function. Dr. Iezzoni pointed out that the settings in which functional impairments may be most obvious are burdened already by huge data collection mandates. Dr. Lollar stated that the methodology he described would code what is already being collected. Dr. Lollar noted that measurement tools are not equal in their relationship with ICIDH.
Obtaining physician response to the methodology is under discussion. Dr. Iezzoni observed and Dr. Lollar responded that pilots would help in identifying and overcoming barriers. Dr. Lollar stated that the learning component will be most problematical for most health care professionals, and that in the behavioral realm, children’s health with be less problematical than adults’. He noted that certain diagnoses interfere with the acquisition of medical insurance, but that identifying an activity limitation related to behavior will not jeopardize the patient’s insurance.
Dr. Placek asserted the unlikelihood of the U.S. adhering to a version of ICIDH different from the WHO version.
Michele Adler, M.P.H., Social Security Administration, noted that the questions on disability in the decennial census are working well. The same questions appear in the National Study of Health and Activity (NSHA) and will be compared with the census. The NSHA will provide information on functioning from different perspectives: self-reported data, proxy data, performance measures, medical examination and medical records, observations, and DDS assessments. The study is a national disability survey of working-age Americans, ages 18-69. Ms. Adler described its goals.
Discussion. The survey distinguishes between activity with and without compensatory devices. The survey is intended to serve as an action study. A major focus is on factors that keep one in or out of the workplace.
Ms. Adler applauded the efforts of the ICIDH. She pointed out that disability relates to interaction with the environment; the effect of the Internet on work and changing definitions of disability has been dramatic, requiring regulations to keep up with the rapid changes.
Mr. Rush noted that disability determinations are related to ICD-9. Mr. Seltser stated that 10 years ago, a task force recommended that the U.S. adopt ICIDH as a classification system that would permit defining disability as a functional term, and he encouraged the committee to examine its possibilities.
Ms. Adler noted invited the Committee to submit global questions for the survey.
Gerry E. Hendershot, Ph.D., Division of Health Interview Statistics, NCHS, stated that upon (anticipated) approval, the ICIDH-2 will be called the International Classification of Functioning and Disability (ICFD). The classification system is part of the WHO family of international classifications related to health. The need for ICIDH results from changes in health issues, such as change from concern with acute conditions to concern with chronic conditions, from interest in disease to interest in the consequences of disease. Diagnosis plus disability information can predict service needs linked to hospitalization and level of care. To use the ICFD, assessment of impairments, of activity limitations, and of participation restrictions is needed.
Dr. Hendershot distinguished between a medical and a social model of disability. ICFD attempts to cover the medical, social, and political aspects of disability in a comprehensive theoretical framework and classification that will also involve applications.
Dr. Hendershot presented a schematic of the framework that represented body function and structure at the body level, activities at the person level, and social participation at the societal level. Features of the classification include a focus on health-related experiences and inclusion of the attributes and experiences of all people. Taxonomic principles guide the classification system. Items within the categories are grouped by similarity and essential properties, and the overall structure is hierarchical.
Discussion. Dr. Hendershot explained to the Subcommittee that the most likely area of their interest is activities limitations. Dr. Newacheck suggested an alternative instrument for the most significant activity limitations. Dr. Hendershot stated that the real contribution of the ICIDH-2 or ICD to the thinking about disability is the participation dimension and the environmental dimension. The ICFD classification system is consistent with the Healthy People 2010 goal to eliminate disparities in that outcomes could be examined.
Ms. Greenberg stated that NCHS will study international differences between activity and participation, and the richness of description, but potential classification ambiguities are inherent in using aspects of the participation dimension in complex activities. Dr. Hendershot described a probable diversity of positions on the privacy issue among disability advocates regarding the level of detail to be reported under the ICFD. He agreed to identify the advocates to the Subcommittee. Dr. Iezzoni suggested cooperation with the Privacy Subcommittee on this issue.
Margo Holm, Ph.D., OTR/L, University of Pittsburgh, described a study of four functional assessment instruments that revealed usage of dissimilar terms, definitions, and measurement scales. She observed that inconsistencies create the potential for inaccuracy of functional status due to differing terms for the same construct, to differing exclusions and inclusions among the same items, to differences in the direction of the scales, and to differences in scale terminology. Variability among the activity/activity limitation sections of the functional assessment tools have implications for both the patient whose performance is being rated and the staff who are required to rate the functional status. When a patient’s status is re-rated with a subsequent admission, differing nomenclatures and scaling can cause confusion. Patients can be rated on more than one instrument simultaneously by the same staff, and some patients may be followed at home by the same physical therapy staff, who must then use a different measure.
Conceptual confusion can impact whether or not a patient or resident is admitted, depending on the results of the screening. Functional status and progress between assessments may trigger early discharge or extended stay. Level of reimbursement also may be affected, as may discharge disposition for assisted living centers, the effectiveness rating for a facility, quality of care in a long- term care facility, and compliance with governmental regulation.
Discussion. Dr. Holm suggested carrying clear and well-defined terms to the next version, and maintaining consistency throughout the levels to facilitate tracking progress. Dr. Meyers noted the existence of a version of FIM for children, a controversial framework. He identified a concern he encounters in major disabling conditions, floor and ceiling effects. Mr. Handler introduced the idea of gender-specific perceptions of terms.
Rune Simeonsson, Ph.D., University of North Carolina, described his preliminary research on functional assessment of children, presented a rationale for a research program and some representative findings, and identified relevant issues. His project collects data on specific subpopulations of children and youth with or without disabilities to differentiate various dimensions of human function and disablement. The focus is on adaptation and quality of life of children and families. Logistical problems include severity in a child, reporting by proxy (by care givers), role of development, and role of development in environments. Recommendations include use of a common language and measurement across several systems for children.
Dr. Simeonsson sees a difference between a model of a taxonomy and a model of human function. A person acts upon or reacts to the environment, and the environment can be a source of stimulation as well as feedback. Physical or mental impairments may limit the interaction, and a sensory limitation may inhibit stimulation from the environment. Some aspects of behavioral style—sometimes referred to as temperament—can be coded to the ICIDH, while others cannot.
Dr. Simeonsson described other studies on disability, including the National Early Intervention Longitudinal Study, which shows great variability in eligibility in early intervention within the current labeling system. He emphasized the importance of coding participants in a government- supported system of services in a way that captures their characteristics.
Dr. Simeonsson stated that functional limitations appear in the areas of communication and learning behavior, and significant health status issues exist. Behavioral style is an important feature of this work. Issues that merit further attention include proxy, development of children’s self- reporting instruments that measure the same dimensions as the parents’ instruments, assistive devices, differences between delay and deficit, characteristics of the environments that mediate functional capability. Consensus is being achieved on the dimensional approach, broadly defined by the body level, performance level, engagement level, and the context. Multiple measurement tools are under development or redevelopment. The most important functional barrier to be surmounted by a common framework is meeting the demands of the school environment in terms of learning, social interaction, and culture.
Discussion. Dr. Simeonsson noted the waste of time in the transition between the services because of lack of common language, and stated that coding the activities dimension at the first level would be valuable. The goal should be coding to a common framework. Over the next few years, a separate version of the ICIDH for children is envisioned.
Allan Meyers, Ph.D., Boston University Schools of Medicine and Public Health, addressed two fundamental concerns: (1) People affected by many types of impairments or disabilities have many of the same characteristics of other special populations and therefore require special methodological attention and sensitivity to measure or characterize their health status or care needs; and (2) impairment and disability are parts of the experiences of normal populations, so care must be taken to make research methods and instruments sufficiently flexible and accessible to as many people as possible.
Dr. Meyers described the methodological and philosophical risks associated with heavy reliance on proxy assessments and noted that proxies should be used selectively. He pointed out the need to expand functional assessments to measure affirmative as well as negative experiences. Function includes such domains as work, leisure, sexual expression, in addition to traditional functional measures. Logistical, methodological, and fiscal costs are associated with this endeavor.
Discussion. Dr. Meyers’s paper on enabling instruments will appear in the August issue of the Archives of Physical Medicine and Rehabilitation. He and Dr. Iezzoni noted their frustration, respectively, with the new version of SF-36 that has left intact the words “walking” and “climbing,” and with a study question inquiring about “difficulty walking”—answered by individuals who use wheelchairs that they have no trouble walking; they do not walk. Dr. Iezzoni noted that the current NHIS does not reveal use of assistive technology.
Jennifer Madans, Associate Director for Science, National Council on Health Statistics, noted that NHIS has measured health in terms of its impact on groups and individuals, but does not incorporate reporting bias into question development. She asserted that despite its deficiencies, the survey is state of the art. The redesign was a great improvement in all areas but limitation of activity and some functioning questions, although serious efforts were made to improve those areas. NHIS questions, which currently assess only injuries and asthma, are geared toward estimating the severity of the sequellae of the condition. Functioning measures needed now include work and school days lost, both important from an economic standpoint regarding lost productivity. The number of lost days is a severity indicator.
Self-assessed health status is an integral part of the NHIS, despite difficulty in interpreting the interaction between person and environment. The NHIS core is presented every year, together with supplements whose focus changes from survey to survey.
Ms. Madans observed that the lack of clear differentiation between environment and the “naked person” impedes data analysis and creates multiple definitions of disability. Difficulties were encountered with the child survey because of the proxy issue. Work continues on developing questions to elicit information on limitation activity and on cognitive functioning. The NHIS attempts to get general attribution, but write-ins are frequent and considerable re-coding generally is necessary. Ms. Madans described problems with the limitation questions, including their implied standards. In addition, societal effects are compounding factors.
Ms. Madans described the HANES questions, which by design closely follow the NHIS questionnaire. Ms. Madans noted a “nice crosswalk” between the HANES and the NHIS.
Elsie Pamuk, Acting Director, Division of Epidemiology, National Council on Health Statistics, presented background on the philosophy, structure, and issues related to the NHIS. In the redesign, it was necessary to acknowledge the value of collecting trend data, while correcting what was perceived by many to be a faulty instrument. The current design is an “unanticipated experiment” in maintaining the sense of the questions in the family core while simultaneously refining them to address identified needs.
Ms. Pamuk compared the 1995 and 1995 NHIS versions with the 1997 version and described differences in results: Increases are seen in activity limitation in preschool and school-age children and in persons age 70 and older, and a substantial decline is seen in working-age adults. The net effect was the addition of questions for certain age groups. All children under age 18 were queried on receipt of early intervention services or special education; for all respondents age 3 and over, ADLs were asked; for everyone 18 and over, IADLs were asked; work questions were asked of everyone age 18 and over. The new questions also included queries on walking and on cognitive function, questions that Ms. Pamuk acknowledged have their own limitations. Among working-age adults, a “fair amount” of decline was recorded, an unexplained result.
Ms. Pamuk encouraged examining the interrelationships between what is reported on the sample adult questionnaire about work, their symptomology and conditions, and what is reported on the family core. The 1998 data will be available soon, and a large sample size is being built. Some work has been done on attention deficit hyperactivity disorder.
Discussion. Ms. Pamuk stated that feedback from the public health community has consisted primarily of requests to include additional questions on individuals’ specific fields of interest. Reaction has been positive to the changes. Frustration exists, however, among individuals who wish to use CATY more. Plans are in the works to incorporate a look-up function for causal condition. The 1998 data will provide clues to whether the decline in limitations is based on problematic data or real health advances. The new version was unable to maintain the time trend.
She presented research findings on methodological advances in measuring disability and functioning. Ms. Madans described the complexity of the issue of environment interaction, including ambiguous terminology. The researchers are looking at the wording, context of the questions, self-report versus proxy, mode of data collection, whether the question is in a health or other type of survey, and sponsor. She described alternative approaches to tease out additional information on level of difficulty or the interaction between person and environment.
Ms. Madans stated that although provider surveys currently are anonymous, there is some impetus to use provider surveys as sampling frames if consent issues can be worked out. Dr. Iezzoni commented that although MEPS and NHIS currently use the same sampling frame, the phrasing of the questions is different, which creates problems for researchers in the disability field. Dr. Iezzoni noted that for disability, where societal issues are involved, it makes sense to spend tax dollars to collect data sets that can be used together.
Subcommittee members discussed the day’s presentations and next steps. Dr. Iezzoni reviewed the tentative schedule for meetings and members offered suggestions for topics and sources of information. Dr. Iezzoni suggested that the Subcommittee will be in a position in October to decide whether pilot studies or further work should be conducted on ICIDH.
Dr. Iezzoni commented that one accomplishment she would like to see emerge from this inquiry is that members of the Committee on Vital and Health Statistics would all know about ICIDH. Dr. Newacheck added that they should understand that ICIDH is the international classification of functioning and disability.
Paul Placek, Ph.D., NCHS, described future steps for the ICIDH. He asserted that it needs repairs, but it is difficult to do. Experts involved in the revision are conducting standards evaluations worldwide. Translations have been completed for twenty languages.
Dr. Placek noted the scheduled activities of the WHO, which has approved eight protocols for study. The WHO Executive Committee meets in February 2001, and, if approved, the ICIDH would be placed on the agenda for the World Health Assembly in May 2001 for a vote as a WHO classification.
Dr. Placek described several versions of the approved version. He described U.S. plans, including sessions using an ICIDH Web-based training tool and studies 1-3—on translation and linguistic evaluation, basic questions, and feasibility and reliability for coding cases and case summaries, respectively. The Web-based tool will be available worldwide in May. Participants in the sessions will include representatives of a wide variety of professional associations, offices of disability, prevention programs within state health departments, and rehabilitation programs. Members discussed potential invitees.
Dr. Hendershot led a discussion of coding cases, using a case study. Members commented that coding requires detailed information, involves some art, and is driven to some extent by insurance payers. Members identified a number of needed improvements in the coding procedures. Dr. Iezzoni suggested the need for developing soon a formal, systematic mechanism for feedback to the WHO.
Dr. Hendershot summarized the strengths and weaknesses of the ICIDH in his view. Weaknesses include its complexity, difficulty in understanding, lack of testing, and little known and used in the United States. Several “glitches” include placement of some concepts. Among its strengths are the ICIDH as a framework and a classification, multidimensional, comprehensive, detailed, sponsored by the WHO, supported by an international network of specialists and experts in the area of disability, multicultural, multi language. Dr. Placek added that it is also multipurpose in its potential applications.
Dr. Simeonsson commented that the ICIDH does not cover functional states that are not health related, such as socioeconomic conditions, independent health conditions, race, gender, or religion. It would be important, however, to frame the interaction effects.
Dr. Placek predicted that the two-digit version would become most widely used. Dr. Newacheck stated that the system would be useful for profiling populations and for public health purposes, but perhaps not sophisticated enough for risk adjustment or certain other purposes. Dr. Placek discussed potential plans to involve well-trained people to look at its potential use in administrative records from a variety of disciplines. Mr. Handler suggested developing an abridged guide to coding.
Dr. Placek discussed the DISTAB project, the use of the ICIDH in surveys. He noted that much of the NHIS data has been back-coded into ICIDH-2 codes. Nine kinds of disabilities are examined. Ms. Coltin noted that the emerging approach is to enter administrative data with Web-based applications, both in the U.S. and internationally.
With just three Committee members in attendance, a discussion on the sense of the committee was not undertaken. Dr. Iezzoni asked Dr. Hendershot to consider whether data should be collected on substantial difficulty with or without an assistive device. She asked Dr. Placek to consider a model for administrative records. Dr. Newacheck suggested indicating whether any of the eight codes apply and then adding a modifier for severity. Dr. Placek offered to introduce the members to the Web tool.
The Subcommittee on Populations conducted a meeting on April 13-14, 2000, to focus on the feasibility, appropriateness, value of, and potential problems with ICIDH codes to provide information about functional status in administrative transactions within the health care setting. An example of an administrative transaction is an encounter form submitted by a physician.
Members, staff, and other participants introduced themselves, and Dr. Iezzoni reviewed the purpose of the meeting.
Donald Lollar, Ed.D., CDC, identified problems with the reliability and validity of data related to participation or environment codes. He described the ICIDH as a companion document to ICD that discusses the associations of disease injury at the body system, personal, and society levels. The environmental concept is not generally “on the screen” in health care settings; rather, a perception of the personal element in society is the norm. The closest element in the ICIDH to a framework that approximates functional status in health care settings is limitations on personal-level activities.
To operationalize this concept, Dr. Lollar presented sample data from the NCHS National Health Interview Survey Disability Supplement and examined questions that would approximate the eight chapters of activities limitations in the ICIDH-2. The eight chapters encompass seeing and/or hearing, learning, communication, movement, moving around/mobility, personal care, routine activities, and behavior. Dr. Lollar pointed out that activity limitations are not necessarily relevant in every patient encounter form.
Dr. Lollar stated that observable characteristics are key to the reliability of proxies. He noted that two valid proxy responses may be possible, but considered together, they would be unreliable if they were done in different settings, by different people, with the person using a different device. He cited a recent, unpublished paper from Yale that showed that just because a physician does not include functional status in the notes, it does not mean that there are no functional problems. Dr. Lollar asserted that this problem must be addressed globally, particularly in training programs for all health care professionals. His agency has funding to mount a pilot effort.
Dr. Lollar suggested focusing on two activity limitations in a record and pointed out several ways to pilot the process: by age, medical specialty, or limitations related only to a primary diagnosis. He cautioned that diagnosis does not predict function. He explained how the eight activity limitations correspond to the ICIDH-2 booklet, pointing out distinctions between how the World Health Organization (WHO) and an international working group see the issues present in the Beta-2 version.
Dr. Lollar suggested that the data fields for diagnosis each accommodate three digits: one for the area of limitation (corresponding to the chapter number), one for the extent of the limitation with no assistance, and one for the level of functioning. Where there are two diagnoses, a report would include two fields of three digits each. His proposal is to add two ICIDH coding fields to physician encounter forms. He noted that back coding will be required—and possible—with other instruments, such as OASIS and Minimal Data Set. In settings where a more defined reporting of function is necessary, the coding system can accommodate that need through mapping.
Dr. Iezzoni pointed out that the settings in which functional impairments may be most obvious are burdened already by huge data collection mandates. Dr. Lollar stated that the methodology he described would code what is already being collected. Mr. Handler pointed out the problems encountered with limiting the number of diagnosis codes.
Dr. Lollar noted that one study shows that measurement tools are unequal in their relationship with ICIDH: FIMS covers a few of the activity limitation areas, but NHIS covers all eight.
Obtaining physician response to the methodology is under discussion. Dr. Iezzoni noted that time limitations for medical appointments limit physicians’ ability to evaluate their patients’ difficulties, say, in walking, because the patients are in place on the examining table when the physician enters the room. Dr. Lollar explained that he deliberately referred to health care professionals, not just physicians, in this process. Dr. Iezzoni observed the need for identifying and overcoming barriers, and Dr. Lollar responded that pilots would serve that purpose.
Dr. Lollar stated that the learning component will be most problematical for health care professionals other than learning specialists, and that in the behavioral realm, children’s health with be less problematical than adults’. He noted that certain diagnoses interfere with the acquisition of medical insurance, but that identifying an activity limitation related to behavior would not jeopardize the patient’s coverage.
Dr. Placek asserted the unlikelihood of the U.S. adhering to a version of ICIDH different from the WHO version. Dr. Lollar explained that the U.S. will “bend over backwards to be a global player and a contributor and a cooperator, but the U.S. must take reasonable steps to ensure its usefulness to the U.S.”
Michele Adler, M.P.H., Social Security Administration, noted that the questions on disability in the decennial are working well. The same questions appear in the National Study of Health and Activity (NSHA) and will be compared with the census.
Ms. Adler described the NSHA, formerly the Disability Evaluation Study, which is expected to provide information on functioning from different perspectives: self-reported data, proxy data, performance measures, medical examination and medical records, observations, and DDS assessments. The study is a national disability survey of working-age Americans, ages 18-69. Its goals are to: (1) estimate and project the size of the potential pool of eligibles; (2) study how some people with impairments work and others do not, vis-à-vis return-to-work initiatives; (3) examine how the retirement decision relates to health, work, and disability; and (4) develop a short set of questions for inclusion in national surveys to monitor changes in disability. Ms. Adler summarized the methodology of the survey, which includes a focus on a broad abilities spectrum, not just on disability, both physical and mental. Six cities currently participate in the pilot, designed to raise response rates, test logistics, and prepare for the true study.
Discussion. Ms. Adler described how survey subjects are chosen. She noted that transportation is provided for physical examinations, and monetary incentives are provided for participation.
The survey distinguishes between activity with and without compensatory devices. Detailed questions are included regarding assisted devices in terms of functioning and working. The survey is not intended to serve as a methodological study, but rather as an action study. A major focus is on factors that keep one in or out of the workplace.
Ms. Adler noted that there has been communication between staff working on the NSHA and SSA’s Childhood Disability Survey.
Ms. Adler applauded the efforts of the ICIDH. She pointed out that disability, rather than being a medical condition, relates to interaction with the environment; the effect of the Internet on work and changing definitions of disability has been dramatic, requiring regulations to keep up with the rapid changes.
Mr. Rush noted that disability determinations are related to ICD-9. Dr. Placek noted the great momentum in and entrenchment of the SSA system, and Mr. Rush observed that the SSA system is bound by laws and regulations. Mr. Seltser stated that 10 years ago a broadly representative task force recommended that the U.S. adopt ICIDH as a classification system that would permit defining disability as a functional term, and he encouraged the committee to examine its possibilities. He explained that ICIDH was not adopted because of a confluence of events unrelated to the issue. Dr. Lollar observed that the SSA listings combine emphases on diagnostic codes, impairments, and functional activity limitations.
Ms. Adler noted that the listings are done from a process point of view, which reveals nothing about secondary conditions or work, for example. She explained that the NSHA will reveal other aspects of individuals’ lives beyond their disabilities and will enable breaking out of the process mode. The Kolb County (Georgia) and the North Carolina telephone surveys have been completed. She urged Subcommittee members to participate and comment.
Ms. Adler explained that although the pilot is not weighted, the main study will be weighted. She invited the Subcommittee to submit global questions for the survey. She noted that plans exist to survey individuals in group homes with fewer than 10 residents, which would eliminate surveys of individuals in institutions, a population that is declining.
Gerry E. Hendershot, Ph.D., Division of Health Interview Statistics, NCHS, introduced the ICIDH and invited Subcommittee members to participate in its Beta-2 testing. Dr. Hendershot’s slide presentation is appended to this report.
Upon (anticipated) approval, the ICIDH-2 will be called the International Classification of Functioning and Disability (ICFD). The classification system is part of the WHO family of international classifications related to health. The need for ICIDH results from changes in health issues, such as change from concern with acute conditions to concern with chronic conditions, from interest in disease to interest in the consequences of disease. Advocacy for and participation by people with disabilities are important aspects of the effort.
Diagnosis plus disability information can predict service needs linked to hospitalization and level of care. Using the ICFD terminology, assessment of impairments, of activity limitations, and of participation restrictions is needed.
Dr. Hendershot distinguished between a medical model and a social model of disability. In the medical model, disability is regarded as a personal problem to be addressed with medical care. Health care policy is appropriate to consider at a higher level of generality. In the social model, disability is viewed as a social problem to be responded to by integrating the person into the biological, psychological, and social milieu in a successful way. Law and social policy, rather than health care policy, are the appropriate societal responses to the problem.
ICFD attempts to cover the medical, social, and political aspects of disability in a comprehensive theoretical framework and classification that will also involve applications. Dr. Hendershot presented a schematic of the framework that represented the body function and structure at the body level, the activities at the person level, and social participation at the societal level. Although the new version of the ICIDH attempts to be activity neutral, impairment is the general focus of body function and structure, activity limitation is the negative focus of activities, and participation restriction is the negative aspect of participation. The framework incorporates the effects of the social and physical environment, and the characteristics of the individual. The emphasis in the ICFD is on the interaction of the components of the total system. Qualifiers to a code, for example, for function and structure, are severity and location; for activities, severity and assistance; for participation, severity.
Features of the classification include a focus on health-related experiences and inclusion of the attributes and experiences of all people. Body function, activities, and participation are conceived as distinct, parallel classifications related to each other at a conceptual level. Appearance may be temporary or permanent; progressive, regressive, or static; intermittent or continuous. These attributes are consequences of health conditions. Activities are associated with everyday life, activity not potential, and may be measured qualitatively or quantitatively. The qualifiers in the area of activities are difficulty and assistance. Participation is the “lived experience” of people with a health condition, impairment, or activity limitation. Taxonomic principles guide the classification system. Items within the categories are grouped by similarity and essential properties, and the overall structure is hierarchical.
Dr. Hendershot described the classification manual, which is also hierarchical in nature. Codes include a letter that represents a consequence/dimension, followed by a general ICFD code and qualifier(s). The first (or sole) qualifier refers to the level of difficulty without use of assistive devices or personal help; a second qualifier describes the assistance the person receives.
Anticipated additional products include clinical descriptions and assessment guidelines, possibly standard measures to be developed for use in research and questionnaires for surveys based on the classification.
Dr. Hendershot described as examples of the classification system attention deficit disorder and walking difficulties. He presented Subcommittee members with a case study as part of a Beta-2 test and requested that they record the results of their coding on a form.
Discussion. Dr. Hendershot explained to the Subcommittee that the most likely area of their interest is activities limitations, which could be dealt with by a survey. Dr. Newacheck suggested an alternative instrument of two fields for the most significant activity limitations. Dr. Hendershot stated that the real contribution of the ICIDH-2 or ICFD to the thinking about disability is the participation dimension and the environmental dimension. A single code would reveal useful information in those two areas, and qualifiers would make information even more valuable. Dr. Lollar pointed out that the ICFD classification system is consistent with the Healthy People 2010 goal to eliminate disparities in that outcomes could be examined; inclusion of this type of detail in administrative records is a good thing. Dr. Newacheck suggested tabling the discussion for Committee consideration.
Ms. Greenberg stated that NCHS will study international differences between activity and participation and the richness of description, but potential classification ambiguities are inherent in using aspects of the participation dimension in complex activities. Dr. Lollar stated the danger in mixing constructs. Some examples in Chapter 8 of the manual can fall into either category.
Dr. Hendershot described a probable diversity of positions on the privacy issue among disability advocates regarding the level of detail to be reported under the ICFD. He agreed to identify the advocates to the Subcommittee. Dr. Iezzoni suggested cooperation with the Privacy Subcommittee on this issue.
Margo Holm, Ph.D., OTR/L, University of Pittsburgh, described a study that compared and contrasted four functional assessment instruments and that revealed usage of dissimilar terms, definitions, and measurement scales. The analysis focused on the portion of each instrument used to rate the activities of daily living or activity limitations. The instruments were a functional independence measure, developed to bring uniform terminology to medical rehabilitation; a minimum data set, developed to provide a comprehensive, standardized assessment with common nomenclature and to identify resources needed to provide quality care in long-term care facilities; an outcome and assessment information set, developed to measure ongoing quality in home health settings; and the MDS-PAC for post-acute care, designed to identify resources needed to provide quality care during short-stay, subacute, and rehabilitation admissions.
Patients’ functional status may be rated on all four instruments over a continuum of care, but the terms used in the instruments are inconsistent with each other, the scales used to rate levels of function differ, and in some cases, the subtasks included in the criteria vary within each item. These inconsistencies create the potential for inaccuracy of functional status due to differing terms for the same construct, to differing exclusions and inclusions among the same items, to differences in the direction of the scales, and to differences in scale terminology. She stated that the variability among the activity/activity limitation sections of the functional assessment tools have implications for both the patient whose performance is being rated and the staff who are required to rate the functional status. When a patient’s status is re-rated with a subsequent admission, differing nomenclatures and scaling can cause confusion. Patients can be rated on more than one instrument simultaneously by the same staff, and some patients may be followed at home by the same physical therapy staff, who must then use a different measure.
Conceptual confusion can impact whether or not a patient or resident is admitted, depending on the results of the screening. Functional status and progress between assessments may trigger early discharge or extended stay. Level of reimbursement also may be affected, as may discharge disposition for assisted living centers, the effectiveness rating for a facility, quality of care in a long- term care facility, and compliance with governmental regulation.
Dr. Holm urged that the Subcommittee consider the conceptual confusion within the ICIDH in its discussions of functional assessment. She observed that dressing is included under activity, but not under participation and personal maintenance; differentiation is difficult between moving around under activity limitation and mobility under participation, based on their overlapping definitions; and ambiguity exists about whether seeing/hearing functions under impairments differ significantly from seeing/hearing under activities.
The four instruments use observation of performance as the method of assessment, with various well-defined time frames for the performance observation. It is not clear what methods of assessment are appropriate for each ICIDH level, particularly for function at the societal level, which can be culture bound.
Discussion. Dr. Holm stated that the WHO model is helpful for conceptualizing the consequences of function, but that it is flawed by conceptual confusion. She suggested carrying clear and well-defined terms to the next version, and maintaining consistency throughout the levels to facilitate tracking progress. The MDS-PAC tried to serve as a consistent data model over the continuum of care, Dr. Holm observed, but it has not done so.
Dr. Meyers noted the existence of a version of FIM for children, a controversial framework. He identified a concern he encounters in the field of spinal cord injury and other major disabling conditions, floor and ceiling effects. FIM is not sensitive to the kinds of clinically and operationally important changes that characterize rehabilitation for people who are quadriplegic. Mr. Handler introduced the idea of gender-specific perceptions of terms.
Rune Simeonsson, Ph.D., University of North Carolina, stated that his research examines the changing paradigm of human function and disability through a modeling of the person-environment interaction, and a dimensional measurement and classification. He has conducted a series of complementary studies that vary in methodologies and samples, but draw on common assessment framework of health status, functional characteristics, secondary conditions, activities, participation, environment, and quality of life. His research draws on the ICIDH for its dimensional framework.
Dr. Simeonsson sees a difference between a model of a taxonomy and a model of human function. A person acts upon or reacts to the environment, and the environment can be a source of stimulation as well as feedback. Physical or mental impairments may limit the interaction, and a sensory limitation may inhibit stimulation from the environment. The performance of activities is a central element. A complex activity is composed of a variety of smaller and minute activities.
In the context of how the body or mind functions, a child performs daily life activities in some cases similarly to (but perhaps in a different form) and in other cases differently from adults. The role of a child is an important factor—student, playmate, family member—and the environment mediates participation in activities.
Dr. Simeonsson described several recently completed studies that showed high rates of difficulty in a student population in following instructions, problem solving, and writing. Behavioral difficulties included reporting being depressed and difficulties in making friends, getting along, and coping with stress, all of which can be coded to the ICIDH-2. As part of the studies, researchers will indicate their level of comfort with the coding. Some aspects of behavioral style, or temperament, can be coded to the ICIDH, while others cannot.
Earlier studies have shown that children with disabilities often have limited access to physical education, although they need it the most. The National Early Intervention Longitudinal Study shows great variability in eligibility within the current labeling system. Eligibility for early intervention depends on a determination of a developmental delay (or risk therefor) or a diagnosed condition, an issue not addressed in the ICIDH. Dr. Simeonsson emphasized the importance of coding participants in a government-supported system of services in a way that captures their characteristics; one schema is to combine categories from ICD-9, ICIDH, and the DSM.
Dr. Simeonsson described coding by functional-classification alternatives to arbitrary special education categories, using findings from the National Survey of School Environments. Another study on coding for functional status of children with spina bifida was conducted; children ages 10 and 11 responded with useful data on their own perspective and the issue of proxy. Secondary physical and developmental conditions and activity limitations were coded to the ICIDH-2, but self- confidence is not codable. Endurance, learning, attention, and problem solving are codable to selected chapters in the activities area. Participation issues, including family and isolation/exclusion issues, are codable to the ICIDH.
Functional limitations appear in the areas of communication and learning behavior, and significant health status issues exist. Behavioral style is an important feature of this work. Issues that merit further attention include proxy, development of children’s self-reporting instruments that measure the same dimensions as the parents’ instruments, assistive devices, differences between delay and deficit, and characteristics of the environments that mediate functional capability.
Consensus is being achieved on the dimensional approach, broadly defined by the body level, performance level, engagement level, and context. Multiple measurement tools are under development or redevelopment. The most important functional barrier to be surmounted by a common framework is meeting the demands of the school environment in terms of learning, social interaction, and culture.
Discussion. Dr. Simeonsson reiterated that the underlying concept of the dimensional approach is inherently attractive and makes good sense. He noted the great waste of time in the transition between the services because of lack of common language and stated that coding the activities dimension at the first level would be valuable. The goal should be coding to a common framework. Over the next few years, a separate version of the ICIDH for children is envisioned, using the same broad framework based, for example, on the relevant codes of the (pediatricians’ primary care version of the) DSM, once the main volume is completed.
Allan Meyers, Ph.D., Boston University Schools of Medicine and Public Health, addressed two fundamental concerns: (1) People affected by many types of impairments or disabilities have many of the same characteristics of other special populations, such as ethnic minorities, people of color, and women, and therefore require special methodological attention and sensitivity to measure or characterize their health status or care needs; and (2) impairment and disability are parts of the experiences of normal populations, so care must be taken not to sequester people with impairments and disabilities, but to make research methods and instruments sufficiently flexible and accessible to as many people as possible.
Dr. Meyers described the methodological and philosophical risks associated with heavy reliance on proxy assessments. Reliance on proxies is driven to a certain degree by research requirements and not science; in a clinical setting, those research requirements fall away and children can speak for themselves. Insufficient testing has been done on people with disabilities to speak or gesture, but the null hypothesis should be that everyone can—and proxies should be used only when the burden is too great. He observed the need to enable research instruments to be useful to as wide a range of people as possible, operationally, conceptually, and philosophically. Self-scoring questionnaires are difficult to complete by people with tremors or who are tetraplegic—thus proxies would be required.
Dr. Meyers also cited as problems research instruments whose content and concepts are offensive or alien to the experiences of people with disabilities, such as SF-36, which confuses the domains of ambulation with the domains of mobility. The order of administration of certain questions should be changed to enable respondents to avoid the necessity acknowledge disability in greater challenges when they have already acknowledged disability in lesser challenges.
He noted the need to expand functional assessments to measure affirmative as well as negative experiences, to place the measure of function in the context of the implicit assumption that function is an intrinsic property. Function includes such domains as work, leisure, and sexual expression, in addition to traditional functional measures. He acknowledged that logistical, methodological, and fiscal costs are associated with this endeavor.
Discussion. Dr. Meyers stated that his paper on enabling instruments will appear in the August issue of the Archives of Physical Medicine and Rehabilitation. He and Dr. Iezzoni noted their frustration, respectively, with the new version of SF-36 that has left intact the words “walking” and “climbing,” and with a study question inquiring about “difficulty walking”—answered by individuals who use wheelchairs that they have no trouble walking; they do not walk. Dr. Iezzoni noted that the current NHIS does not reveal use of assistive technology.
Jennifer Madans, Associate Director for Science, National Council on Health Statistics, noted that all NCHS surveys are works in progress. She introduced the work of Nancy Markowitz of the Center for Excellence in Health Statistics. Ms. Madans stated that the NHIS’s approach to function is consonant with a continuum of interrelated sectors. NHIS has always measured health in terms of its impact on groups and individuals, producing a sociological definition of health, but the NHIS does not incorporate reporting bias into the development of its questions.
Ms. Madans stated that despite its deficiencies, the survey is at the state of the art. The redesign was a great improvement in all areas except limitation of activity and some of the functioning questions, although serious efforts were made to improve those areas. Functioning is approached in a variety of ways in several sections of the survey. The NHIS currently assesses only injuries and asthma. Rather than estimating function, these questions are geared toward estimating the severity of the sequelae of the condition.
Functioning measures needed now, said Ms. Madans, include work and school days lost; from a health perspective this question is not important, but from the economic standpoint in terms of lost productivity, it is important. The number of lost days is used as a severity indicator, the use of which in the redesign characterizes health status through conditions without counting.
Self-assessed health status is an integral part of the NHIS, despite the difficulty in interpreting the interaction between person and environment using ADLs and IADLs. Functioning items such as walking and climbing refer to unassisted functioning. The NHIS core is presented every year, together with supplements whose focus changes from survey to survey.
Ms. Madans observed that the lack of clear differentiation between environment and the “naked person” impedes data analysis and creates multiple definitions of disability. Differentiation is important in matching the self-report to other exams and in longitudinal studies. She suggested periodically using the HANES-1 follow-up and the LSOA to determine level of functioning.
Dr. Iezzoni suggested the use of skip questions. Ms. Pamuk noted that technical issues related to switching to CAPY bogged down the development of the redesign, and Ms. Madans pointed out that changing skip patterns will be easier over the next few years.
Limitation of activity questions are asked of one adult in the household, and difficulties were encountered with the child survey because of the proxy issue. Work continues on developing questions to elicit information on limitation activity and on cognitive functioning. The NHIS attempts to get general attribution, but write-ins are frequent and considerable re-coding generally is necessary. Onset information is also collected.
Ms. Madans described problems with the limitation questions, including their implied standards. There is no standard for “limitation,” which also may be based on such characteristics as age or gender. In addition, societal effects are compounding factors; for example, the ability to work may depend on the local unemployment rate in addition to physical functioning.
Ms. Madans described the HANES questions, which by design closely follow the NHIS questionnaire. More functioning exam questions, and therefore objective measures, appear in HANES-3; the HANES 99+ version has fewer. Some work has been conducted on comparing the self-report to the objective measures, between which there is currently a significant disconnect. Using both measures in one survey can lead to improvement in the self-report and “keep you honest.” Cognitive functioning is better measured. Ms. Madans noted a “nice crosswalk” between the HANES and the NHIS.
Discussion. Although over-sampling implies knowledge of the whereabouts of subjects, screening is possible with an effective screener. Over-sampling can be expensive.
Elsie Pamuk, Acting Director, Division of Epidemiology, National Council on Health Statistics, presented background on the philosophy, structure, and issues related to the NHIS. In the redesign, it was necessary to acknowledge the value of collecting trend data, while correcting what was perceived by many to be a faulty instrument. The current design is an “unanticipated experiment” in maintaining the sense of the questions in the family core while simultaneously refining them to address identified needs.
Ms. Pamuk compared the 1995 and 1995 NHIS versions with the 1997 version, finding that activity limitations due to a chronic health condition dropped slightly. But, Ms. Pamuk observed, minimal change is produced by counterbalancing more extreme changes in various age groups: increases are seen in activity limitation in preschool and school-age children and in persons age 70 and older, and a substantial decline is seen in working-age adults. In the old NHIS, questions incorporated a set of embedded hierarchies, including the type of activity implied for each age group. In the revision, some wording changes were made: Work questions were asked of everyone; and no questions were asked about the nature of respondents’ major activity.
The net effect was the addition of questions for certain age groups. All children under age 18 were queried on receipt of early intervention services or special education; for all respondents age 3 and over, ADLs were asked; for everyone 18 and over, IADLs were asked; work questions were asked of everyone age 18 and over. The new questions also included queries on walking and on cognitive function, questions that Ms. Pamuk acknowledged have their own limitations.
Findings of an analysis of differences between the old and new versions include the following:
Among working-age adults, a “fair amount” of decline was recorded. The new question related to limitations in kind or amount of work possible and this result is unexplained. Ms. Pamuk suggested that the phrase “emotional, physical, or mental” might have a chilling effect on answering this question about what Dr. Iezzoni termed a “stigmatized condition.” Ms. Pamuk stated that for these age groups, no significant change is recorded in ADLs (which are rare, noted Dr. Iezzoni), but there was a decline in reported IADLs between 1996 and 1997.
Ms. Pamuk encouraged people to look at the interrelationships between what is reported on the sample adult questionnaire about work, their symptomology, conditions, and what is reported on the family core. The 1998 data will be available soon, and a large sample size is being built. Some work has been done on attention deficit hyperactivity disorder.
Discussion. Ms. Pamuk stated that feedback from the public health community has consisted primarily of requests to include additional questions on individuals’ specific fields of interest. Otherwise, reaction has been positive to the changes, particularly to the locus of the NHIS on the individual. Frustration exists, however, among individuals who wish to use CATY to a greater extent. Although plans are in the works to incorporate a look-up function for causal condition, it is not yet available. The 1998 data will provide clues as to whether the decline in limitations is based on problematic data or genuine health advances.
Ms. Madans observed that the new version was unable to maintain the time trend. She then presented findings from researchers at the University of Michigan, the University of Maryland, and the Center for Excellence in Health Statistics who are working on methodological advances in measuring disability and functioning. Ms. Madans pointed out the complexity of the issue of environment interaction, including ambiguous terminology. The researchers are looking at the wording, context of the questions, self-report versus proxy, mode of data collection, whether the question is in a health or other type of survey, and sponsor. She described alternatives to the wording, for example, of different types of questions to tease out additional information on level of difficulty or the interaction between person and environment, and a follow-up question that asks respondents how they can accomplish an activity. A second alternative is another set of statements administered to the subjects in reinterviews. Another technique is to rank a person described in a vignette of personal characteristics. New research will begin soon on reliability of the alternative questions compared with the original questions. Ms. Madans noted that the limitation question is the only role-functioning question, and that there are problems with that.
Ms. Madans stated that although provider surveys currently are anonymous, there is some impetus to use provider surveys as sampling frames if consent issues can be worked out. She noted that MEPS does not get all records because they are expensive; they get differentially sampled records, depending on where they need to get the actual cost data. Linkages are helpful with Medicare records for the 65-and-over population in the longitudinal aging survey and would be helpful with OASIS data.
Dr. Iezzoni commented that although MEPS and NHIS currently use the same sampling frame, the phrasing of the questions is different, which creates problems for researchers in the disability field. She suggested that MEPS change their phrases. Ms. Coltin suggested involving NCVHS in that process. Ms. Madans stated that that will be done when they get the data from HCFA, although some harmonization issues remain to be worked out.
Dr. Iezzoni noted that for disability, where societal issues are involved, it makes sense to spend tax dollars to collect data sets that can be used together. She suggested writing a letter to that effect to the Data Council. Ms. Madans suggested writing to Ross and to Jane Gentleman. Ms. Coltin advised giving examples of specific questions that should be aligned. Dr. Iezzoni stated that the issue of the four-year time trend is valid.
Subcommittee members discussed the day’s presentations and next steps. Dr. Iezzoni stated that on April 14 and again in July the Subcommittee will hear about the June ICIDH training. Testimony from disability advocacy groups and provider groups should be solicited. In the fall, the Subcommittee will seek information on the results of the pilot study to be conducted.
Dr. Iezzoni suggested that the Subcommittee will be in a position in October to decide whether pilot studies or further work should be conducted on ICIDH. By the end of October, the group can make a specific statement about what they have learned about ICIDH and whether it will be useful to fund pilot studies or if barriers are too great.
Ms. Coltin urged inviting to testify someone familiar with qualifiers and changes in their values on the person level, in order to support medical effectiveness studies by enabling data collection over time. Another issue would be the ability of ICIDH to look at changes over time with alternatives such as person-specific samples. Dr. Iezzoni stated that international experts involved in this area would be valuable resources. Dr. Newacheck concurred; knowing whether parallel efforts in other countries are ongoing would be valuable to determine feasibility. Michael Wolfson of Canada might testify again. Ms. Greenberg stated that Canada may be looking at using ICIDH in rehabilitation data, but may not have extensive experience in using it. Ms. Coltin suggested learning about the relative merits of various approaches to introduce the pilot. Dr. Iezzoni noted the possibility of inviting Donald Lollar to speak on implementation.
Ms. Ward stated that the approach should be as practical as possible. Dr. Newacheck noted the desirability of inspiring people to think ahead. Dr. Iezzoni stated that a placeholder exists for functional status on the electronic data transmission standard.
In closing the day’s program, Dr. Iezzoni commented that one accomplishment she would like to see emerge from this inquiry is that members of the Committee on Vital and Health Statistics would all know about ICIDH. Dr. Newacheck added that they should understand that ICIDH is the international classification of functioning and disability.
The meeting recessed at 4:55 p.m and reconvened the following day at 8:10 a.m.
Paul Placek, Ph.D., NCHS, described future steps for the ICIDH. He asserted that ICFD needs repairs, but it is difficult to know which. Experts involved in the revision are conducting standards evaluations worldwide. Translations have been completed for twenty languages.
Dr. Placek noted the activities of the WHO, which has approved eight protocols for study. All collaborating forces and task forces are required to do studies 1-3; the United States is doing 1-3, 5, and part of 8. Studies 1-3 (field trials) will be conducted in May 2000. The WHO is hosting an interim meeting of heads of ICIDH in late June. From June through December, the WHO writing team will revise the ICIDH. The annual WHO revision meeting will take place November 14-18, 2000, in Madrid. The WHO Executive Committee meets in February 2001, and if approved, the ICIDH would be placed on the agenda for the World Health Assembly in May 2001 for a vote as a WHO classification. Implementation and related tools would follow. Several versions are currently in circulation. Among researchers working on various versions are Rune Simeonsson, Gail Whiteneck, and David Gray.
Dr. Placek described several versions of the approved version and distributed handouts. He described U.S. plans, including sessions using an ICIDH Web-based training tool and studies 1- 3—translation and linguistic evaluation, basic questions, and feasibility and reliability for coding cases and case summaries, respectively. The Web-based tool will be available worldwide in May. Participants will include representatives of a wide variety of professional associations, offices of disability, prevention programs within state health departments, and rehabilitation programs. Representatives of some of the 16 states that are doing disability data collection in the BRFSS have been invited as have representatives from the World Institute on Disability.
Dr. Iezzoni suggested including on the invitation list the American Medical Association, American College of Physicians, American College of Surgeons, American Academy of Pediatrics, Orthopedics, American Academy of Neurology, CPT, the American Psychological Association, American Psychiatry Association, American Physical Medicine and Rehabilitation Association, and more coding people. Ms. Coltin suggested adding the American Group Practice Association. Ms. Greenberg suggested Donna Pickett. Dr. Placek noted the American Association of University Affiliated Facilities. Dr. Placek agreed to update the Subcommittee on the characteristics of the individuals who asked to participate. Participants will be able to either code their own cases or use a series of WHO vignettes.
Ms. Greenberg suggested that a representative of the Subcommittee might attend the North American Collaborating Center meeting, September 14-15, 2000, in Washington, D.C.
Dr. Hendershot presented a coding case study. Members commented that coding requires detailed information, involves some art, and is driven to some extent by insurance payers. Dr. Hendershot described the process the coders will use and the feedback they will provide, including ease of coding, meaningfulness, and time to code. He emphasized that the ICFD is a classification of the consequences of disease and disorder.
Members identified a number of needed improvements in the coding procedure. For example, Dr. Simeonsson suggested refining the linguistics of the instrument to distinguish between impairment and loss of body part. Members also noted practical and linguistic issues related to the distance standard. Dr. Simeonsson suggested qualifiers to help define the situation with and without an assistive device. Dr. Iezzoni suggested the need for developing soon a formal, systematic mechanism for feedback to the WHO, separate from the testing format.
In the participation domain, the number of societal roles to code also was identified as an open issue, particularly in the public health context to present population-based information on the health of the public; a balance is needed between the richness of the data it will be possible to collect and practical constraints. Dr. Simeonsson observed that the dimension of having access to something, as opposed to having a choice to do something, is important in participation—a concept difficult to operationalize. Dr. Iezzoni stated that proxy is of concern in this area and that the originator of the data also may affect the validity of the assessment.
Dr. Hendershot summarized the strengths and weaknesses of the ICIDH in his view. Weaknesses include its complexity, difficulty in understanding, lack of testing, and little visibility and use in the United States. Several “glitches” include placement of seeing, hearing, and talking in the body rather than in the activities dimension. Some major life activities are dealt with in the activities section rather than in participation. Among its strengths are the ICIDH as a framework and a classification, multidimensional, comprehensive, detailed, sponsored by the WHO, supported by an international network of experts in the area of disability, multicultural, multilanguage. Dr. Placek added that it is also multipurpose in its potential applications.
Dr. Simeonsson commented that the ICIDH does not cover functional states that are not health related, such as socioeconomic-economic conditions, independent health conditions, race, gender, or religion. It would be important, however, to frame the interaction effects. Dr. Hendershot explained that different cultures might have different standards of participation, and it would be possible to examine data by cultural expectations. Ms. Coltin identified the difficulty in making comparisons internationally. Ms. Greenberg suggested engaging Bedirhan Ustun, M.D., World Health organization, and Cille Kennedy, Ph.D., of ASPE, in the dialogue on multicultural considerations.
Dr. Simeonsson suggested that in the current version, one can enter in the middle of the model with arrows going in multiple directions. In the example of female illiteracy, there is a disability because it is in the activities domain. But it might not be possible to attribute it to a health condition. Another issue is the development of a definition of disability in the developing world with children, to capture activities and function.
Dr. Placek predicted that the two-digit version would become the one most widely used. The two-digit version actually includes four place markers: for example, A839: A for activity, 8 for chapter 8, and then two digits. Dr. Newacheck stated that the system would be useful for profiling populations and for public health purposes, but perhaps not sophisticated enough for risk adjustment or certain other purposes. Dr. Placek discussed potential plans to involve well-trained people to look at its potential use in administrative records from a variety of disciplines. Mr. Handler suggested developing an abridged guide to coding.
Dr. Placek discussed the DISTAB project, study 5, the use of the ICIDH in surveys. He noted that much of the NHIS data has been back-coded into ICIDH-2 codes. Nine kinds of disabilities are examined. In the international realm, it is not possible to capture all information. A group of top survey statisticians met first in November 1999 and has met monthly subsequently. Final findings are expected to be reported in September 2000 at the NAC meeting. Dr. Placek suggested internationalizing the project by contacting these individuals to recommend administrative records experts in other countries. This subject might also be raised at the interim meeting of the heads of ICIDH to solicit additional contacts. Dr. Iezzoni suggested that impetus for an international focus might better come from the DISTAB project than from the Committee, and Mr. Placek agreed to broach the subject.
Ms. Coltin noted that the emerging approach is to enter administrative data with Web-based applications, both in the U.S. and internationally.
With just three Subcommittee members in attendance, Dr. Iezzoni did not initiate a discussion on the sense of the committee. She asked Dr. Hendershot to consider whether data should be collected on substantial difficulty with or without an assistive device. She asked Dr. Placek to consider a model for administrative records. Dr. Newacheck suggested indicating whether any of the eight codes apply and then adding a modifier for severity. Dr. Placek offered to introduce the members to the Web tool; Dr. Iezzoni suggested including Dr. Simon Cohn and the Workgroup on Computer-Based Patient Records.
The Netherlands currently uses the ICIDH.
Members discussed the format possibilities for a pilot study related to administrative records. Plans were discussed for a conference call (with handouts in hand) including the absent Subcommittee members and Dr. Hendershot to work through his case study presentation. Dr. Cohn, Kathleen Frawley, and Jeff Blair might also be invited to attend.
Members discussed the need for timely receipt of meeting minutes.
The meeting was adjourned at 9:50 a.m.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
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Chair Date