Surveillance, as used in public health, refers to tracking incidence and prevalence of target populations as well as identifying characteristics that can influence or contribute to their health. A frequently cited figure for intellectual disabilities and developmental disabilities (ID/DD) prevalence in adults in the U.S. suggests approximately 4.6 million Americans live with these conditions, or about 1.5% of the adult population (Larson, Lakin, Anderson, Kwak, Lee, & Anderson, 2000; Larson, Lakin, Anderson, Kwak, Lee, & Anderson, 2001; Fujiura & Taylor, 2003). There are two primary reasons why this figure continues to be cited approximately 15 years after its initial publication. The first is that it uses data from a supplement to a well-respected, national health survey of people in the American population conducted in two phases during 1994–1995. This survey provided extensive health data on the disability population,but has not been administered since Absent a more recent update, the Disability Supplement to the National Health Interview Survey (CDC, 2015) continues to be used in spite of health and demographic changes in our general population since then that may call into question the accuracy of these prevalence numbers today. The second reason relates to the structural difficulties inherent in population-based surveillance for people with ID/DD using other approaches. These include a lack of a widely agreed upon operational definition, and challenges in administering surveys for ID/DD populations relating to communication, overcoming stigmatization, maintaining confidentiality, and assuring accurate proxy reporting.

BACKGROUND: Surveillance on paralysis prevalence has been conceptually and methodologically challenging. Numerous methods have been used to approximate population-level paralysis prevalence estimates leading to widely divergent prevalence estimates. OBJECTIVE/HYPOTHESES: To describe three phases in use of the International Classification of Functioning, Disability and Health (ICF) as a framework and planning tool for defining paralysis and developing public health surveillance of this condition. METHODS: Description of the surveillance methodology covers four steps: an assessment of prior data collection efforts that included a review of existing surveys, registries and other data collection efforts designed to capture both case definitions in use and prevalence of paralysis; use of a consensus conference of experts to develop a case definition of paralysis based on the ICF rather than medical diagnostic criteria; explanation of use of the ICF framework for domains of interest to develop, cognitively test, validate and administer a brief self-report questionnaire for telephone administration on a population; and development and administration of a Paralysis Prevalence and Health Disparities Survey that used content mapping to back code items from existing national surveys to operationalize key domains. RESULTS: ICF coding led to a national population-based survey of paralysis that produced accurate estimates of prevalence and identification of factors related to the health of people in the U.S. living with paralysis. CONCLUSIONS: The ICF can be a useful tool for developing valid and reliable surveillance strategies targeting subgroups of individuals with functional disabilities such as people with paralysis and others.

Disability is an emerging field within public health; people with significant disabilities account for more than 12% of the US population. Disparity status for this group would allow federal and state governments to actively work to reduce inequities. We summarize the evidence and recommend that observed differences are sufficient to meet the criteria for health disparities: population-level differences in health outcomes that are related to a history of wide-ranging disadvantages, which are avoidable and not primarily caused by the underlying disability. We recommend future research and policy directions to address health inequities for individuals with disabilities; these include improved access to health care and human services, increased data to support decision-making, strengthened health and human services workforce capacity, explicit inclusion of disability in public health programs, and increased emergency preparedness.

Efforts to improve clinical preventive services (CPS) receipt among women with disabilities are poorly understood and not widely disseminated. The reported results represent a 2-year, Centers for Disease Control and Prevention and Association of Maternal and Child Health Programs partnership to develop a central resource for existing tools that are of potential use to maternal and child health practitioners who work with women with disabilities. Steps included contacting experts in the fields of disability and women's health, searching the Internet to locate examples of existing tools that may facilitate CPS receipt, convening key stakeholders from state and community-based programs to determine their potential use of the tools, and developing an online Toolbox. Nine examples of existing tools were located. The tools focused on facilitating use of the CPS guidelines, monitoring CPS receipt among women with disabilities, improving the accessibility of communities and local transportation, and training clinicians and women with disabilities. Stakeholders affirmed the relevance of these tools to their work and encouraged developing a Toolbox. The Toolbox, launched in May 2013, provides information and links to existing tools and accepts feedback and proposals for additional tools. This Toolbox offers central access to existing tools. Maternal and child health stakeholders and other service providers can better locate, adopt and implement existing tools to facilitate CPS receipt among adolescent girls with disabilities who are transitioning into adult care as well as women with disabilities of childbearing ages and beyond.

Chronic diseases and conditions are serious threats to the population's health. Chronic diseases represent seven of the top ten causes of mortality in the U.S. and are major economic drivers underlying burgeoning national health costs. People with disabilities experience dramatically higher rates of some chronic conditions, but only recently has this problem been recognized. We propose a set of contributing factors and a model to help better understand the relationship of disability with chronic disease. The paper summarizes current CDC initiatives to include disability status and considerations in public health surveys and programs, exemplifying a strategy to promote inclusion of people with disabilities in mainstream programs wherever possible; use cross-disability strategies for conditions unique to people with disabilities where necessary; and implement condition-specific approaches where essential. This initial model is intended to invite dialog on a conceptual framework for preventing chronic conditions and additional functional limitations among people with disabilities.

BACKGROUND: Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provide direction on what to do to reduce these disparities among adults with intellectual disabilities. METHODS: The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. RESULTS: Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed-methods. CONCLUSIONS: Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life-course model and emphasis on leveraging inclusion in mainstream services where possible.

BACKGROUND: Research has found some disparities between U.S. women with and without disabilities in receiving clinical preventive services. Substantial differences may also exist within the population of women with disabilities. The current study examined published research on Pap smears, mammography, and clinical breast examinations across disability severity levels among women with disabilities. METHODS: Informed by an expert panel, we followed guidelines for systematic literature reviews and searched MEDLINE, PsycINFO, and Cinahl databases. We also reviewed in-depth four disability- or preventive service-relevant journals. Two reviewers independently extracted data from all selected articles. FINDINGS: Five of 74 reviewed publications of met all our inclusion criteria and all five reported data on Pap smears, mammography, and clinical breast examination. Articles classified disability severity groups by functional and/or activity levels. Associations between disability severity and Pap smear use were inconsistent across the publications. Mammography screening fell as disability level increased according to three of the five studies. Results demonstrated modestly lower screening, but also were inconsistent for clinical breast examinations across studies. CONCLUSION: Evidence is inconsistent concerning disparities in these important cancer screening services with increasing disability levels. Published studies used differing methods and definitions, adding to concerns about the evidence for screening disparities rising along with increasing disability. More focused research is required to determine whether significant disparities exist in cancer screening among women with differing disability levels. This information is essential for national and local public health and health care organizations to target interventions to improve care for women with disabilities.

This study investigated associations between chronic medical conditions, activities of daily living (ADL), and health-related quality of life (HRQOL). Our findings suggest that the number of ADL limitations reported by older adults is associated with their HRQOL. Findings from our analyses also suggest that the association between having multiple comorbid conditions and HRQOL is stronger for those with no ADL limitations than those with at least some limitations. These data will aid practitioners in determining the relative importance of chronic medical conditions and ADL limitations on HRQOL and demonstrate how ADL limitations and comorbid conditions may differentially impact HRQOL.

This article describes the development of Promoting Access to Health Services (PATHS), an intervention to promote regular use of clinical preventive services by women with physical disabilities. The intervention was developed using intervention mapping (IM), a theory-based logical process that incorporates the six steps of assessment of need, preparation of matrices, selection of theoretical methods and strategies, program design, program implementation, and evaluation. The development process used methods and strategies aligned with the social cognitive theory and the health belief model. PATHS was adapted from the workbook Making Preventive Health Care Work for You, developed by a disability advocate, and was informed by participant input at five points: at inception through consultation by the workbook author, in conceptualization through a town hall meeting, in pilot testing with feedback, in revision of the curriculum through an advisory group, and in implementation by trainers with disabilities. The resulting PATHS program is a 90-min participatory small-group workshop, followed by structured telephone support for 6 months. ((PsycINFO Database Record (c) 2012 APA, all rights reserved) (journal abstract).)

OBJECTIVES: We examined factors that influence health-related quality of life (HRQOL) among individuals aged 50 years and older with and without functional limitations. METHODS: We analyzed data from the 2009 Behavioral Risk Factor Surveillance System to assess associations among demographic characteristics, health care access and utilization indicators, modifiable health behaviors, and HRQOL characterized by recent physically and mentally unhealthy days in those with and those without functional limitations. We defined functional limitations as activity limitations owing to physical, mental, or emotional health or as the need for special equipment because of health. RESULTS: Age, medical care costs, leisure-time physical activity, and smoking were strongly associated with both physically and mentally unhealthy days among those with functional limitations. Among those without functional limitations, the direction of the effects was similar, but the size of the effects was substantially smaller. CONCLUSIONS: The availability of lower cost medical care, increasing leisure-time physical activity, and reducing rates of cigarette smoking will improve population HRQOL among older adults with and without functional limitations. These factors provide valuable information for determining future public health priorities.

The World Health Organization in collaboration with the World Bank developed the World Report on Disability to inform governments of countries about the importance of disability, analyze scientific information, and provide recommendations for action at the national and international levels. The report is remarkably readable, comprehensive, and concise. There are recurrent themes of the connection between disability and poverty, and within disability groups, the relatively greater vulnerability of women, children, and persons with mental health disabilities. Chapter content includes an overview of disability, global view addressing measurement and prevalence, general health care, rehabilitation, assistance and supports, enabling environments, education, work and employment, and recommendations for moving forward. The report successfully illustrates a great need for improved data, policies, and programs, while describing promising practices that can inform policy makers in addressing these needs. This report is highly recommended reading for anyone interested in a global view on disability and should be required reading for any students in disability and public health.

PURPOSE: Assess extent to which generic Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales include function in assessment of health, and identify health assessment items that are free of functional content. METHODS: An expert panel on measurement of health and disability reached consensus on definitions of health, disability, and function. They assessed all items of all generic (non-condition-specific) scales in the 2006 ProQolid database for being important to measuring health as distinct from function. Ratings were summarized as content validity ratios. Retained items were written into standard format and reviewed again by the expert panel and a validity panel with expertise in specific disabilities. RESULTS: Of 85 scales, 21 were retained as containing items important for assessing health. Scales ranged from 100% (BRFSS HRQOL, WHO-5) to only 4% of items rated as important. In further review of "important" items, functional content was identified in many of the items, particularly with regard to mental functioning. CONCLUSIONS: Popular generic scales of QOL and HRQOL vary greatly in the degree to which they include content on function. A pool of items can be identified that are relatively free of function. Distinguishing measurement of function and health is particularly important for people with long-standing functional limitations and for assessing the relationship of health with function.

PURPOSE: The objective of this study was to assess the factor structure of nine health-related quality of life (HRQOL) survey items among people with and without disabilities or functional limitations (FL) and determine whether factor loadings were similar for the two groups. METHODS: Data were from US states and territories in the 2001 and 2002 Behavioral Risk Factor Surveillance System (BRFSS). Confirmatory factor analyses assessed fit of the data to a previously found factor structure. RESULTS: A two-factor structure was confirmed, conceptually representing physical and mental health. Although this structure fit data for both people with and without FL, factor loadings were significantly different for the two groups. In all but one instance, factor loadings were higher for people with FL than for people without FL. CONCLUSIONS: Results suggest that people with and without FL conceptualize physical and mental HRQOL similarly. However, the nine items analyzed appear to be a better reflection of the latent constructs of physical and mental HRQOL in the population of people with FL than those without FL.

OBJECTIVE: To determine whether Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) items show differential item functioning among healthy adults with various types of functional limitations as compared with a healthy sample with no identified limitations. DESIGN: Survey responses were analyzed by using partial correlations. SETTING: General community. PARTICIPANTS: Participants (N=206) included (1) adults with spinal cord injury (SCI), (2) adults who were deaf or hard of hearing, (3) adults who were legally blind, (4) adults with psychiatric or emotional conditions, and (5) adults with no reported functional limitations. Participants were screened to ensure the absence of substantial health problems. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: SF-36. RESULTS: Partial correlations showed a significant negative correlation, indicating differential item functioning (ie, apparent bias) for people with SCI on all 10 SF-36 Physical Functioning items. For people who were blind, 5 items showed a significant negative correlation. Two items had significant negative correlations for the deaf/hard-of-hearing group. One item showed significant negative performance for people with mental health conditions. CONCLUSIONS: Our data indicated a possibility for measurement bias caused by the blending of health and function concepts in the SF-36.

BACKGROUND: A policy resolution supporting physician aid in dying was proposed to the American Public Health Association (APHA) in 2007 that prompted a debate with the Disability Section on its meaning for people with disabilities. OBJECTIVE: The present paper reflects on the issues revealed and lessons learned. METHODS: The debate included subcommittee discussion; review of research, polls, administrative reports; discussion with disability rights organizations; and floor-debate and vote by the APHA Governing Council. RESULTS: Reflections on the process are summarized under the themes: we all have our own views; it's highly personal; confusion among key concepts; I might want it for myself; it's about control and not about pain; the slippery slope and other arguments; and undue burden on people with disabilities. CONCLUSIONS: The APHA resolution supporting aid in dying was passed in 2008 with some improvements in the language and a recommendation to measure pre-existing disability. Valuable lessons were learned through the debate process.