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. Most working age individuals with one or more chronic condition(s) do not have high service need or use, but among those that do, functional and activity limitations are quite common. 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, with African American and Hispanic individuals fairing worse than whites in several measures of service use and/or health insurance coverage. 7. Over 40 percent of all annual visits to Emergency Rooms are made by people with disabilities. Three key factors affect their ED use: access to regular medical care (including prescription medications), extent of disability, and the complexity of their health profiles. From October 01, 2016 to September 30, 2017, the activities conducted for this project have focused primarily on dissemination. This included the publication of the ACHCN definition and screener itself (in press) as well as associated products, such as a scoping literature review on the measurement of chronic conditions and disability (currently under review) and a book chapter on the epidemiology of disability and chronic conditions in the United States and internationally (in press). Presentations on the ACHCN work were also made at the Heller School for Social Policy and Management and the NIH Clinical Center. Additionally, work has begun on the creation of a new pooled analysis file, drawn from multiple years of the Medical Expenditure Panel Survey (2010-2014). This will enable the research team to continue with secondary data analyses in the coming year.

Agency
National Institute of Health (NIH)
Institute
Clinical Center (CLC)
Type
Investigator-Initiated Intramural Research Projects (ZIA)
Project #
1ZIACL060067-10
Application #
9555572
Study Section
Project Start
Project End
Budget Start
Budget End
Support Year
10
Fiscal Year
2017
Total Cost
Indirect Cost
Name
Clinical Center
Department
Type
DUNS #
City
State
Country
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