Our key findings indicate: 1. As determined by our expert measurement panel, Adults with Chronic Health Care Needs can be usefully defined at the population level as Adults 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. 2. As determined by our secondary data analyses, ACHCN are not a special population, but may instead comprise over half of working age persons. Thus, the screener we have developed to identify this population includes elements that can be used for stratification into meaningful subgroups for the purpose of informing policies, programs, and services intended to support the population. 3. As also determined by our analyses, multiple chronic conditions are the norm among ACHCN, and the number of chronic conditions experienced rises with the extent of disability. 4. Among ACHCN, adults with functional limitations (in such areas as seeing, hearing, mobility and cognition) have elevated rates of need and utilization of healthcare services, while individuals with ADL and IADL limitations have the highest rates. 5. Access problems, such as delay or non-receipt of needed medical care, are significantly greater among ACHCN compared to individuals without chronic health care needs. While ACHCN are somewhat more likely to be insured than their counterparts, substantial numbers report being uninsured part or all of the average year. 6. Healthcare disparities based on race/ethnicity demonstrably affect people with disabilities. 7. Over 40 percent of all annual visits to Emergency Rooms are made by people with disabilities. From October 01, 2014 to September 30, 2015, the activities conducted for this project have focused on instrument testing and development. Partnering with the CDC through an interagency agreement, cognitive testing was performed on the NIH ACHCN screener at the National Center for Health Statistics Questionnaire Design Research Laboratory. A total of 56 individuals with a wide spectrum of disabilities, chronic conditions and health care needs were interviewed over three rounds of testing. The screening questions were analyzed and edited in an iterative process in order to maximize respondent comprehension and to improve question performance. We worked closely with NCHS on the final report which is now complete and which includes the finalized question set. Concurrently, we have been developing a protocol for the first field test of the ACHCN screener in partnership with the Ohio State University Medical Center. The field test will include approximately 900 patients served by their medical system and will allow us to analyze the sensitivity and specificity of our instrument, as well as to test our subgrouping methodology. Finally, we published a paper with the Disability and Health Journal based on our analyses of high healthcare utilization patterns among people with chronic conditions and disabilities using data we pooled from the 2006-2008 Medical Expenditure Panel Survey. Publications generated by this year's research: Reichard A, Gulley S, Rasch EK, Chan L: Diagnosis isn't enough: Understanding the connections between high health care utilization, chronic conditions and disabilities among U.S. working age adults. Disability and Health Journal 2015; In press.

Agency
National Institute of Health (NIH)
Institute
Clinical Center (CLC)
Type
Investigator-Initiated Intramural Research Projects (ZIA)
Project #
1ZIACL060067-08
Application #
9154114
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Project Start
Project End
Budget Start
Budget End
Support Year
8
Fiscal Year
2015
Total Cost
Indirect Cost
Name
Clinical Center
Department
Type
DUNS #
City
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Zip Code
Gulley, Stephen P; Rasch, Elizabeth K; Altman, Barbara M et al. (2018) Introducing the Adults with Chronic Healthcare Needs (ACHCN) definition and screening instrument: Rationale, supporting evidence and testing. Disabil Health J 11:204-213
Rasch, Elizabeth K; Gulley, Stephen P; Chan, Leighton (2013) Use of emergency departments among working age adults with disabilities: a problem of access and service needs. Health Serv Res 48:1334-58
Gulley, Stephen P; Rasch, Elizabeth K; Chan, Leighton (2011) The complex web of health: relationships among chronic conditions, disability, and health services. Public Health Rep 126:495-507
Gulley, Stephen P; Rasch, Elizabeth K; Chan, Leighton (2011) Ongoing coverage for ongoing care: access, utilization, and out-of-pocket spending among uninsured working-aged adults with chronic health care needs. Am J Public Health 101:368-75
Gulley, Stephen P; Rasch, Elizabeth K; Chan, Leighton (2011) If we build it, who will come? Working-age adults with chronic health care needs and the medical home. Med Care 49:149-55