Leveraging Public Health Research to Inform State Legislative Policy that Promotes Health for Children and Families.

Purpose Engagement in policy is an essential public health service, with state legislatures serving as important arenas for activity on issues affecting children and families. However, a gap in communication often exists between policymakers and public health researchers who have the research knowledge to inform policy issues. We describe one tool for researchers to better leverage public health research to inform state legislative policymaking on issues of relevance to children and families. Description The Oregon Family Impact Seminar (OFIS), adapted from the Policy Institute for Family Impact Seminars, applies a systematic process to bring a synthesis of research findings on public health issues to state legislators using a six-step process: (1) identify candidate topics, (2) recruit legislative champions, (3) select the topic, (4) identify and prepare speakers, (5) host the presentations, and (6) develop and disseminate a research brief as a follow-up contact. Assessment Use of this model in Oregon has produced policy impact; for example, the 2015 presentation, "Two-Generation Approaches to Reduce Poverty," prompted ongoing dialogue culminating in a new statute to increase Earned Income Tax Credit for parents with young children. This approach also has strengthened relationships among researchers and legislators, which serves to streamline the OFIS process. Conclusion This model is an effective vehicle for leveraging public health research findings to inform state-level policy. This model also serves to connect researchers with opportunities to engage with policymakers to address significant public health problems, particularly those addressing social, economic, and environmental determinants of health for children and families.

Persons with disabilities as an unrecognized health disparity population.

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.

Tools for improving clinical preventive services receipt among women with disabilities of childbearing ages and beyond.

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.

Health disparities of adults with intellectual disabilities: what do we know? What do we do?

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.

Research About Us, With Us: An Inclusive Research Case Study.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.

Multiple chronic medical conditions and health-related quality of life in older adults, 2004-2006.

INTRODUCTION: Understanding longitudinal relationships among multiple chronic conditions, limitations in activities of daily living, and health-related quality of life is important for identifying potential opportunities for health promotion and disease prevention among older adults. METHODS: This study assessed longitudinal associations between multiple chronic conditions and limitations in activities of daily living on health-related quality of life among older adults (≥65 years) from 2004 through 2006, using data from the Medicare Health Outcomes Survey (N = 27,334). RESULTS: Using a longitudinal path model, we found the numbers of chronic conditions at baseline and 2-year follow-up were independently associated with more limitations in activities of daily living at 2-year follow-up. In addition, more limitations in activities of daily living at 2-year follow-up were associated with worse health-related quality of life during the follow-up time period. The association between multiple chronic conditions and indices of health-related quality of life was mediated by changes in limitations in activities of daily living. CONCLUSION: Both baseline and new multiple chronic conditions led to worse health in terms of activities of daily living and health-related quality of life and should be considered important outcomes to intervene on for improved long-term health. In addition, public health practitioners should consider addressing classes of multiple chronic conditions by using interventions designed to reduce the emergence of multiple chronic conditions, such as physical activity, reductions in smoking rates, and improved and coordinated access to health care services.

Recruiting the Voices of Persons With Intellectual and Developmental Disabilities in Policy Development: Priorities for Health Equity Data.

Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and self-determination. Adults with IDD believe parents or support persons do not always share their views, raising concerns about proxy reporting. Surveys and information need to use clear language, visual aids, and provide neutral supports. Information should be shared broadly, including to persons with IDD and families, health care professionals, and policy makers.

Health-related quality of life among older adults with and without functional limitations.

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.

Using intervention mapping to promote the receipt of clinical preventive services among women with physical disabilities.

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.

Putting "ME" into measurement: Adapting self-report health measures for use with individuals with intellectual disability.

BACKGROUND: Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID. AIMS: This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest). METHODS AND PROCEDURES: We used an inclusive research approach, in which we collaborated with adults with ID to revise, cognitively test, and pilot test cognitively accessible self-report measures. Technology supported the independent completion of measures. We assessed usability, usefulness, and reliability of these measures in 41 adults with ID. OUTCOMES AND RESULTS: The resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest). CONCLUSIONS AND IMPLICATIONS: Self- report by adults with ID is feasible. A key element of this measure adaptation process was engaging adults with ID. More research is needed to understand the reliability and validity of the adapted measures and the characteristics of the population for whom they are most usable.

It's time to reconsider how we define health: Perspective from disability and chronic condition.

Our understanding of health has changed substantially since the World Health Organization initially defined health in 1948 as "a state of complete physical, mental and social and well-being and not merely the absence of disease or infirmity". These changes include reconceptualizing health on a continuum rather than as a static state, and adding existential health to physical, mental, and social well-being. Further, good health requires adaptation in coping with stress and is influenced by social, personal and environmental factors. Building on prior work, we propose a reconsidered 2020 definition: "Health is the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment." Health is dynamic, continuous, multidimensional, distinct from function, and determined by balance and adaptation. This new definition has implications for research, policies, and practice, with particular relevance for health considered within a context of disability and chronic conditions.

Invisible populations: Who is missing from research in intellectual disability?

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the "hidden majority." Very little is known about the health and well-being of these adults. It remains to be seen if the hidden majority is comparably susceptible to mental health difficulties, given how little is known about this population by DD systems. The purpose of this manuscript is to highlight where one may identify individuals belonging to this hidden population and how researchers might effectively recruit from this group so as to ensure more representative samples of all people with IDD.

Structure of health-related quality of life among people with and without functional limitations.

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.

Differential performance of SF-36 items in healthy adults with and without functional limitations.

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.

Self-rated health in persons with spinal cord injury: relationship of secondary conditions, function and health status.

OBJECTIVE: Self-rated health is used frequently as a measure of health in the general population, and increasingly with persons with disabilities. However, its meaning and its relationship with other measures of self-reported health (health status and secondary conditions) are not well understood for this group. The purpose of the present study was to use a conceptual model to examine the structure of self-rated health with persons with spinal cord injuries. METHODS: A US sample of 270 adults with mobility impairment stemming from spinal cord injury (SCI) provided data on three measures of self-reported health that differ in degree of subjectivity: physical problems common to SCI, four domains of health status from the SF-36, and a single item on self-rated health. Data were compared with the norm sample of the SF-36. The conceptual model was tested using path analyses. RESULTS: SF-36 scores were lower on three of four domains compared with the norm sample. The conceptual model analyses indicated that 35% of variance in self-rated health is accounted for through direct relationship with physical secondary conditions common to persons with SCI and as mediated through SF-36 domains of Role Physical and Vitality. The SF-36 domain of Physical Function was statistically unrelated to self-rated health. CONCLUSION: The conceptual model of self-rated health was verified in a sample of persons with SCI. Importantly, the SF-36 domain of Physical Function does not relate to self-rated health for this group. Its inclusion in measures of self-reported for disability populations creates difficulty without apparent benefit.

Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities.

Health promotion programs for people with disabilities are in the early stages of development. This critical review utilizes a credentialed expert panel to develop a set of guidelines for community-based health promotion programs for individuals with disabilities. The procedures include a review of background material, systematic literature review with drafted guidelines consisting of operational, participation and accessibility recommendations. The role that those with disabilities can play is addressed and includes program planning, implementation and evaluation, physical and programmatic accessibility of programs, and importance of evidence-based practices.

Developing summary scores of health-related quality of life for a population-based survey.

OBJECTIVE: Health-related quality of life (HRQOL) is an important indicator of public health. The Centers for Disease Control and Prevention's (CDC's) Behavioral Risk Factor Surveillance System (BRFSS) includes nine HRQOL items that can be used to monitor the health status of the nation. The objective of this study was to examine the numerical relationships among these HRQOL items to develop summary scores by combining items. METHODS: Using 2001 and 2002 BRFSS data from states that included all nine HRQOL questions, factor analyses were performed to determine whether the items would group together into multi-item scales. RESULTS: Two factors emerged, corresponding conceptually to a physical health construct and a mental health construct. The resulting scales demonstrated acceptable internal consistency and ability to distinguish between population subgroups known to differ on HRQOL. CONCLUSIONS: This study provides support for condensing the BRFSS core and optional HRQOL questions into two scales. These scales provide more complete information about physical and mental HRQOL than is available from single items, while limiting the number of individual variables required for a given analysis. However, the four core HRQOL questions focus primarily on physical health. Thus, the five supplemental questions should be included when measuring mental health is of interest.

A Call for Better Data on Prevalence and Health Surveillance of People With Intellectual and Developmental Disabilities.

The U.S. approach to the health of people with intellectual and developmental disabilities (IDD) is fraught with paradox. The health of this population has been of longstanding concern, yet we understand their health less well than many other groups. The U.S. spends much more per person on the well-being of people with IDD compared to the general population, yet the outcomes of those expenditures are disappointing and include significant preventable health disparities. Even as expectations for people with IDD have changed to include better health and greater participation in their communities, eligibility for services that support these outcomes is rooted in expectations of dependence and poverty. This article is a call for better data that considers a series of questions to provide context for understanding the need and directions for better health surveillance of people with IDD.