Context and Goals
Developing Quality of Care Measures for People with Disabilities: Summary of Expert Meeting
Today in the United States, at least 54 million people live with disabilities.1 This number will increase substantially in coming decades, with aging "baby boomers" driving much of the growth. At the other end of the life span, rising numbers of children and youth are also living with disabilities, many assisted by technological breakthroughs and major advances in medical science. Worrisome trends linked primarily to obesity in children and young adults suggest that disability numbers also may increase when these young people reach middle-age. Thus, in coming years, a substantial fraction of the U.S. population will likely have one or more disabling conditions.
Disabilities are diverse, complicating efforts to describe the full range of specific health care needs of all those who have disabilities. The majority of individuals with disabilities need the same screening, preventive, and wellness services as do people who do not have disabilities—services to prevent or detect disease and maximize health and well-being. Depending on their physical, sensory, and cognitive status, however, people with disabilities might need these routine services to be delivered in ways that accommodate their particular impairments. In addition, that subset of individuals whose impairments result from specific diseases or clinical conditions also may require treatments or interventions for their particular underlying health conditions or functional impairments.
People also need care to prevent development of secondary conditions (i.e., other health problems causally related to their primary disabling condition). Yet others seek health services, not necessarily to treat or eliminate impairments, but instead to find ways to restore or remedy function (e.g., assistive technologies, such as wheelchairs for mobility). Data from public health insurance programs—Medicare and especially Medicaid—suggest that individuals with disabilities are among the heaviest and costliest users of health care services.
Despite these frequently intensive health care needs, little is known about the quality of care for people who have disabilities. Some information is available about the use of routine screening and preventive services among individuals with disabilities, with most studies documenting significant disparities in this care. Healthy People 2010,2 the U.S. Surgeon General's 2005 "Call to Action to Improve the Health and Wellness of Persons with Disabilities,"3 and the National Council on Disability's 2009 report, The Current State of Health Care for People with Disabilities,4 address this topic. All highlight disparities in routine screening and preventive services for people who have disabilities.
In its annual National Healthcare Disparities Report (NHDR), the Agency for Healthcare Research and Quality (AHRQ) includes persons with disabilities and special health care needs among its priority populations (Go to ). Since 2007, the NHDR has focused on several different disparity indicators each year for persons with disabilities.5,6,7 In 2009, the NHDR looked at: access to care by examining delays and/or the inability to get dental care; health care utilization by quantifying dental visits; underinsurance for persons age 18-64 with private health insurance (family out-of-pocket medical expenses excluding premiums exceeding 10% of total family income); and financial burden of health care costs for those ages 18-64 (family out-of-pocket medical expenses including premiums exceeding 10% of total family income).7 For all access to care measures, for example, within each race/ethnicity, income, and education group, individuals with basic activity limitations or with complex activity limitations experienced disadvantages compared with those who had neither basic nor complex activity limitations. In a number of instances, persons with complex activity limitations were more disadvantaged than those with basic activity limitations.
Although routine screening, preventive services, and the quality measures in the NHDR are important, these indicators provide relatively narrow insights into the quality of health care for persons with disabilities. However, there are several impediments to broader assessments of health care quality for people with disabilities. To address these and other issues related to measuring quality of care for people with disabilities, the Agency for Healthcare Research and Quality (AHRQ) convened a 1-day meeting of nationally recognized experts to begin the task of developing research priorities to guide future work in this field. This report summarizes the meeting, including a list of research priorities for measure development.
AHRQ Director Carolyn Clancy, MD, in her videotaped opening remarks for the meeting, noted the most fundamental problem: "The vast majority of [quality] measures and tools that we currently have at our disposal were developed without including this population. If we're going to be truly successful in improving the quality, safety, efficiency, and effectiveness of health care for all Americans, that has to change." Dr. Clancy noted that it was to be a working meeting, organized by AHRQ's Division of Priority Populations Research within the Office of Extramural Research, Education, and Priority Populations, and that it was convened as part of an effort to formulate an action plan for developing quality of care measures from existing data that eventually could be used to track disparities in quality and access to care for persons with disabilities.
In his opening comments, Francis D. Chesley, Jr., MD, director of AHRQ's Office of Extramural Research, Education, and Priority Populations, echoed Dr. Clancy's goals. He urged meeting participants to be "driven towards a research agenda and actionable items for AHRQ."