Introducing the Adults with Chronic Healthcare Needs (ACHCN) definition and screening instrument: Rationale, supporting evidence and testing.

BACKGROUND: Among working age adults in the United States, there is a large, heterogeneous population that requires ongoing and elevated levels of healthcare and related services. At present, there are conflicting approaches to the definition and measurement of this population in health services research. OBJECTIVE: An expert panel was convened by the National Institutes of Health with the objective of developing a population-level definition of Adults with Chronic Healthcare Needs (ACHCN). In addition, the panel developed a screening instrument and methods for its use in health surveys to identify and stratify the population consistently. METHODS: The panel employed multiple methods over the course of the project, including scoping literature reviews, quantitative analyses from national data sources and cognitive testing. RESULTS: The panel defined the ACHCN population as "Adults (age 18-65) with [1] ongoing physical, cognitive, or mental health conditions or difficulties functioning who [2] need health or related support services of a type or amount beyond that needed by adults of the same sex and similar age." The screener collects information on chronic health conditions, functional difficulties, and elevated use of or unmet need for healthcare services. CONCLUSIONS: Adapted from the Maternal and Child Health Bureau definition that identifies Children with Special Healthcare Needs, aligned with the ACS-6 disability measure, and consistent with the HHS Multiple Chronic Condition Framework, this definition and screener provide the research community with a common denominator for the identification of ACHCN.

An evaluation of the American Community Survey indicators of disability.

BACKGROUND: Collection of data in the Census for implementing disability legislation has been continuous since 1970 although the questions used have changed several times. Concerns have been raised about the ability of the newest question set developed for the American Community Survey (ACS) to adequately represent the population with disabilities because it does not capture all those eligible for certain benefit programs. OBJECTIVE: Using national data, we examine how the addition of questions on the receipt of SSI/SSDI changes the composition of the population identified by the ACS measures. In ancillary materials we also examine the addition of a work limitation question to the population identified by ACS measures. METHODS: Using descriptive secondary analysis of 2011 NHIS data we compare the characteristics of those identified by the ACS questions to those identified by the ACS questions and receipt of SSI/SSDI and those only receiving SSI/SSDI. The comparison is based on conditions, specific functional limitations and severity of limitation. RESULTS: The results provide evidence ACS questions identify a population representing persons at risk for participation difficulties including those who receive SSI/SSDI. The ACS population has higher proportions with mental health and development disabilities than comparison population. The ancillary data demonstrates the work limitation question does not make a significant difference in identifying recipients of SSI/SSDI. CONCLUSION: The analysis demonstrates that the disability measures developed for the ACS produce an unbiased picture of the population with disabilities by including persons with all conditions, more severe disability or selected types of functional limitations.

Disability in U.S. Households, 2000-2010: Findings from the National Health Interview Survey.

Understanding the demographic structure of households containing members with disabilities is of key importance in policy planning for populations with disabilities at state and national levels. Yet, most, but not all, previous family-level studies of disability have excluded persons living alone or with unrelated persons (e.g., a housemate or an unmarried partner) because they are not considered families. To address this gap, the authors utilize National Health Interview Survey data to produce household-level estimates of disability using a detailed household type variable that includes households omitted from previous reports. Findings indicate that one-person households made up 24.7% of all households with an adult aged 18-64 with a disability, and 42.9% of all households with an adult aged 65 or older with a disability. Including nonfamily households provides a clearer picture of the association between living arrangements and disability in the U.S.

Definitions, concepts, and measures of disability.

The term "disability" is a shorthand expression or as explained in the International Classification of Functioning, Disability and Health an umbrella term. It has been used to identify the impairments that result from disease and injury, the physical, and mental or emotional functional limitations or difficulties a person has as a result of the impairments, as well as the participation restriction they experience when the environment is not supportive. Thus the term disability has been used to represent almost any of the conceptual components associated along the ability continuum that impacts the person, but it also includes the environmental effects that create a limiting impact from the context outside the person. This paper examines those concepts and definitions to provide insight into the measurement process to represent this important element of health and participation.

Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: the work of the Washington Group on Disability Statistics.

The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organizations that was organized under the aegis of the United Nations Statistical Division. The purpose of the Washington Group is to deal with the challenge of disability definition and measurement in a way that is culturally neutral and reasonably standardized among the UN member states. The work, which began in 2001, took on added importance with the passage and ratification of the UN Convention on the Rights of Persons with Disabilities since the Convention includes a provision for monitoring whether those with and without disabilities have equal opportunities to participate in society and this will require the identification of persons with disabilities in each nation. The International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization provided a framework for conceptualizing disability. Operationalizing an ICF-based approach to disability has required the development of new measurement tools for use in both censuses and surveys. To date, a short set of six disability-related questions suitable for use in national censuses has been developed and adopted by the Washington Group and incorporated by the United Nations in their Principles and Recommendations for Population and Housing Censuses. A series of extended sets of questions is currently under development and some of the sets have been tested in several countries. The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations. This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities.

Convergence and divergence: differences in disability prevalence estimates in the United States and Canada based on four health survey instruments.

An analysis of data from the Joint Canada/United States Survey of Health (JCUSH), allows us to compare prevalence estimates that result from four different question sets designed to assess disability from a group of respondents residing in either Canada or the United States. Depending upon the question set used and the coding applied to the responses, age-standardized prevalence estimates varied widely in both countries. In the U.S. noninstitutionalized adult population, disability prevalence estimates ranged from as low as 15.3% to as high as 36.4%, while in Canada the estimates ranged from 13.4% to 37.3%. Concordance and discordance in identification as disabled among these question sets were also examined. In both countries, less than 20% of those identified as disabled by any question set were identified as disabled on all four question sets when using conservative response coding to define disability. Concordance in answers to these questions was also found to be associated with older age, single marital status, low education and low income in both countries. Discordance between question set pairs was similar across both countries whether among measures based on the same domains of disability or different domains of disability. The theory, methods and future of disability measurement in health surveys are discussed in light of these findings. We conclude that understanding and interpreting national prevalence estimates requires more thoughtful attention to the purposes for which data are being collected, the specific definition and operationalizations of disability for those purposes, the methodology used in the data collection and analysis process and the areas of both commonality and difference in the populations identified by each question set. In terms of cross-cultural comparisons, the use of a common set of questions and answer categories and similar survey methodologies provides much more robust results.

Health of community-dwelling adults with mobility limitations in the United States: incidence of secondary health conditions. Part II.

OBJECTIVE: To compare incident health conditions that occurred over a 2-year period in nationally representative groups of adults with mobility, nonmobility, and no limitations. DESIGN: Data were collected prospectively from a probability subsample of households that represent the civilian, noninstitutionalized U.S. population. SETTING: Five rounds of household interviews were conducted over 2 years. PARTICIPANTS: Data were analyzed on the same respondents from the 1996-1997 Medical Expenditure Panel Survey (MEPS) and the 1995 National Health Interview Survey Disability Supplement. Respondents were categorized into 3 groups for analysis; those with mobility limitations, nonmobility limitations, and no limitations. The analytic sample included 12,302 MEPS adults (>/=18y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Number, types, and 2-year incidence of self-reported health conditions compared across groups. RESULTS: The mean number of incident conditions (95% confidence intervals [CIs]) over the 2-year period was greatest in adults with mobility limitations (mean, 4.7; 95% CI, 4.4-4.9) compared with those with nonmobility limitations (mean, 3.9; 95% CI, 3.7-4.2) or no limitations (mean, 2.6; 95% CI, 2.5-2.7). Incident conditions affected most major body systems. CONCLUSIONS: Because secondary conditions are potentially preventable, determining factors that influence their occurrence is an important public health issue requiring specific action.

Health of community-dwelling adults with mobility limitations in the United States: prevalent health conditions. Part I.

OBJECTIVE: To characterize the extent and types of prevalent health conditions among nationally representative groups of adults with mobility, nonmobility, and no limitations. DESIGN: Data were collected during 5 rounds of household interviews from a probability subsample of households that represent the civilian, noninstitutionalized U.S. population. With some exceptions, round 1 variables were used for this analysis. SETTING: Community. PARTICIPANTS: Data were analyzed on the same respondents from the 1996 to 1997 Medical Expenditure Panel Survey (MEPS) and the 1995 National Health Interview Survey Disability Supplement. Respondents were categorized into 3 groups for analysis: those with mobility limitations, nonmobility limitations; and no limitations. The analytic sample included 13,897 MEPS adults (> or =18y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Number, types, and prevalence of self-reported health conditions compared across groups. RESULTS: On average, adults with mobility limitations had significantly more prevalent conditions (3.6) than those with nonmobility limitations (2.4), or no limitations (1.3). Greater comorbidity existed in the context of fewer personal resources and more than half of adults with mobility limitations were working age. CONCLUSIONS: Determining factors that influence the health of adults with mobility limitations is a critical public health issue.

Disability in two health care systems: access, quality, satisfaction, and physician contacts among working-age Canadians and Americans with disabilities.

BACKGROUND: An overarching question in health policy concerns whether the current mix of public and private health coverage in the United States can be, in one way or another, expanded to include all persons as it does in Canada. As typically high-end consumers of health care services, people with disabilities are key stakeholders to consider in this debate. The risk is that ways to cover more persons may be found only by sacrificing the quantity or quality of care on which people with disabilities so frequently depend. Yet, despite the many comparisons made of Canadian and U.S. health care, few focus directly on the needs of people with disabilities or the uninsured among them in the United States. This research is intended to address these gaps. Given this background, we compare the health care experiences of working-age uninsured and insured Americans with Canadian individuals (all of whom, insured) with a special focus on disability. Two questions for research guide our inquiry: (1) On the basis of disability severity level and health insurance status, are there differences in self-reported measures of access, utilization, satisfaction with, or quality of health care services within or between the United States and Canada? (2) After controlling covariates, when examining each level of disability severity, are there any significant differences in these measures of access, utilization, satisfaction, or quality between U.S. insured and Canadian persons? METHODS: Cross-sectional data from the Joint Canada/United States Survey of Health (JCUSH) are analyzed with particular attention to disability severity level (none, nonsevere, or severe) among three analytic groups of working age residents (insured Americans, uninsured Americans, and Canadians). Differences in three measures of access, one measure of satisfaction with care, one quality of care measure, and two varieties of physician contacts are compared. Multivariate methods are then used to compare the healthcare experiences of insured U.S. and Canadian persons on the basis of disability level while controlling covariates. RESULTS: In covariate-controlled comparisons of insured Americans and Canadians, we find that people with disabilities report higher levels of unmet need than do their counterparts without disabilities, with no difference in this result between the nations. Our findings on access to medications and satisfaction with care among people with disabilities are similar, suggesting worse outcomes for people with disabilities, but few differences between insured U.S. and Canadian individuals. Generally, we find higher percentages who report having a regular physician, and higher contact rates with physicians among people with disabilities than among people without them in both countries. We find no evidence that total physician contacts are restricted in Canada relative to insured Americans at any of the disability levels. Yet we do find that quality ratings are lower among Canadian respondents than among insured Americans. However, bivariate estimates on access, satisfaction, quality, and physician contacts reveal particularly poor outcomes for uninsured persons with severe disabilities in the United States. For example, almost 40% do not report having a regular physician, 65% report that they need at least one medication that they cannot afford, 45% are not satisfied with the way their care is provided, 40% rate the overall quality of their care as fair or poor, and significant reductions in contacts with two types of physicians are evident within this group as well. CONCLUSION: Based on these results, we find evidence of disparities in health care on the basis of disability in both Canada and the United States. However, despite the fact that Canada makes health insurance coverage available to all residents, we find few significant reductions in access, satisfaction or physician contacts among Canadians with disabilities relative to their insured American counterparts. These results place a spotlight on the experiences of uninsured persons with disabilities in America and suggest further avenues for research.

Impact of differential item functioning on age and gender differences in functional disability.

OBJECTIVES: Estimates of group differences in functional disability may be biased if items exhibit differential item functioning (DIF). For a given item, DIF exists if persons in different groups do not have the same probability of responding, given their level of disability. This study examines the extent to which DIF affects estimates of age and gender group differences in disability severity among adults with some functional disability. METHODS: Data came from the 1994/1995 National Health Interview Survey Disability Supplement. Analyses focused on 5,750 adult respondents who received help or supervision with at least one of 11 activities of daily living/instrumental activities of daily living tasks. We estimated gender and age group (18-39, 40-69, and 70+) differences in disability, using multiple-indicator/multiple-cause models, which treat functional disability as a latent trait. RESULTS: Nine items manifested significant DIF by age or gender; DIF was especially large for "shopping" and "money management." Without adjusting for DIF, middle-aged persons were less disabled than elderly men, and women were less disabled than men among nonelderly persons. After adjusting for DIF, middle-aged persons did not differ from elderly persons, and gender differences within age groups were not significant. DISCUSSION: Comparisons of disability across sociodemographic groups need to take DIF into account. Future research should examine the causes of DIF and develop alternative question wordings that reduce DIF effects.