Michael H. Fox

Understanding the context of health for persons with multiple chronic conditions: moving from what is the matter to what matters.

PURPOSE An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC). METHODS Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research. RESULTS Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community. CONCLUSION Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life.

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.

Reducing Obesity Among People With Disabilities.

Achieving healthy weight for people with disabilities in the United States is a challenge. Obesity rates for adults and children with disabilities are significantly higher than for those without disabilities, with differences remaining even when controlling for other factors. Reasons for this disparity include lack of healthy food options for many people with disabilities living in restrictive environments, difficulty with chewing or swallowing food, medication use contributing to changes in appetite, physical limitations that can reduce a person’s ability to exercise, constant pain, energy imbalance, lack of accessible environments in which to exercise or fully participate in other activities, and resource scarcity among many segments of the disability population. In order for there to be a coordinated national effort to address this issue, a framework needs to be developed from which research, policy, and practice can emerge. This paper reviews existing literature and presents a conceptual model that can be used to inform such a framework, provides examples of promising practices, and discusses challenges and opportunities moving forward.

Using population-based data to examine preventive services by disability type among dually eligible (Medicare/Medicaid) adults

BACKGROUND Individuals dually eligible for Medicaid and Medicare constitute a small percentage of these programs populations but account for a disproportionately large percent of their total costs. While much work has examined high expenditures, little is known about their health and details of their health care utilization. OBJECTIVE/HYPOTHESIS Utilize an important public health surveillance tool to better understand preventive service use among the dual eligible population. METHODS This study involved descriptive and regression analyses of dual eligibles in the Medical Expenditure Panel Survey data from pooled alternate years 2000-2008. We classified the sample into 4 mutually exclusive groups: cognitive limitations, physical disabilities, double diagnosis (cognitive limitations and physical disability), or neither cognitive limitations nor physical disability. RESULTS For most groups, age was significantly associated with preventive services, though direction varies. Older age was linked to greater receipt of flu shots while younger age was associated with greater receipt of Pap tests, mammograms and dental services. Black women in all groups (except cognitive limitations) had an increased likelihood of receiving a Pap test and a mammogram. CONCLUSIONS A subset of dual eligibles drives the majority of expenditures. People with physical disabilities, regardless of whether they also have a cognitive limitation, are among the highest costing and sickest of our non-institutionalized dual eligible population. Efforts to understand and address the challenges faced by women with physical disabilities in accessing Pap tests or mammograms may be helpful in improving the overall health status for this disability group, but also for all dual eligibles.

Obesity in children with developmental and/or physical disabilities

Children with developmental or physical disabilities, many of whom face serious health-related conditions, also are affected by the current obesity crisis. Although evidence indicates that children with disabilities have a higher prevalence of obesity than do children without disabilities, little is known of the actual magnitude of the problem in this population. To address this concern, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) held a conference on obesity in children with intellectual, developmental, or physical disabilities, bringing together scientists and practitioners in the fields of obesity and disability to foster collaboration, identify barriers to healthy weight status in populations with disabilities, propose avenues to solutions through research and practice, and develop a research agenda to address the problem. This article describes current knowledge about prevalence of obesity in this population, discusses factors influencing obesity risk, and summarizes recommendations for research presented at the conference.

Toward a conceptual model for national policy and practice considerations

Chronic diseases and conditions are serious threats to the populations 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.

A National Profile of Health Care and Family Impacts of Children With Muscular Dystrophy and Special Health Care Needs in the United States

We used the 2005−2006 National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.

Prevalence and Characteristics of Sexual Violence Against Men with Disabilities

INTRODUCTION Few studies have examined lifetime and past-year sexual violence against men with disabilities and the types of perpetrator-survivor relationships among men with disabilities. The purpose of this study is to document the prevalence of lifetime and past-year sexual violence against men with disabilities in the U.S., compare these estimates with those of men without disabilities and women with and without disabilities, and examine the gender and relationship of the perpetrator of sexual violence against men with disabilities relative to perpetrator characteristics identified in incidents against other adults. METHODS Behavioral Risk Factor Surveillance System 2005-2007 data were analyzed in 2014 using domain analysis and multivariate logistic regression. RESULTS Men with a disability were more likely than men without a disability to report lifetime sexual violence (8.8% vs 6.0%). They were also more likely than men without a disability to report lifetime experience of attempted or completed nonconsensual sex (5.8% and 2.3% vs 4.1% and 1.4%, respectively). There were no statistically significant differences between the two groups of mens reports of their relationship to the perpetrator of the most recent incident of sexual violence or perpetrator gender. CONCLUSIONS Men with disabilities are at heightened risk for lifetime and current sexual violence compared with men without disabilities. Given the relatively high prevalence of sexual violence among people with disabilities of both genders, sexual assault screening, prevention, and response efforts need to be inclusive and attentive to all people with disabilities.

Using the international classification of functioning, disability and health to expand understanding of paralysis in the United States through improved surveillance

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.

Development of a community health inclusion index: an evaluation tool for improving inclusion of people with disabilities in community health initiatives

BackgroundCommunity health initiatives often do not provide enough supports for people with disabilities to fully participate in healthy, active living opportunities. The purpose of this study was to design an instrument that focused on integrating disability-related items into a multi-level survey tool that assessed healthy, active living initiatives.MethodsThe development and testing of the Community Health Inclusion Index (CHII) involved four components: (a) literature review of studies that examined barriers and facilitators to healthy, active living; (b) focus groups with persons with disabilities and professionals living in geographically diverse settings; (c) expert panel to establish a final set of critical items; and (d) field testing the CHII in 164 sites across 15 communities in 5 states to assess the instrument’s reliability.ResultsResults from initial analysis of these data indicated that the CHII has good reliability. Depending on the subscale, Cronbach’s alpha ranged from 0.700 to 0.965. The CHII’s inter-rater agreement showed that 14 of the 15 venues for physical activity or healthy eating throughout a community had strong agreement (0.81 – 1.00), while one venue had substantial agreement (0.61 – 0.80).ConclusionThe CHII is the first instrument to operationalize community health inclusion into a comprehensive assessment tool that can be used by public health professionals and community coalitions to examine the critical supports needed for improving healthy, active living among people with disabilities.