To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition.
Design and Setting
We analyzed data from the National Health Interview Survey from 1999 to 2002. We present bivariate analysis and multiple logistic regression of reported health care access barriers in the United States stratified by health insurance status.
The study population included 1109 survey respondents with and 22 481 without disabling chronic conditions, aged 19 to 29 years.
Main Outcome Measures
Delayed or unmet health needs owing to cost, no contact with a health professional in the prior year, and no usual source of care.
Thirty-five percent of respondents with and 15% without disabling chronic conditions reported an unmet health care need owing to cost (P<.001). Uninsurance rates for young adults with and without disabling chronic conditions were similar (26% vs 28%, respectively), and uninsurance was significantly associated with unmet health care needs. More than two thirds of uninsured respondents with a disabling chronic condition reported an unmet health need and 45% reported no usual source of care. After adjusting for sociodemographic factors, uninsured young adults with disabling chronic conditions had 8 times greater odds of reporting unmet health care needs and 6 times greater odds of having no usual source of care relative to insured respondents with disabling chronic conditions.
Despite increasing attention to issues of health care transition for young adults with disabling chronic conditions, this study suggests that uninsurance is as common among these young adults as nondisabled peers and is significantly associated with health care access barriers in this population.
The population of young adults in the United States with chronic medical and mental health conditions has more than doubled during the last 35 years, in part owing to improved diagnosis and management of conditions during childhood.1 The provision of uninterrupted services to young adults with disabling chronic conditions as they transition from pediatric to adult health care is one of the goals of the Department of Health and Human Services as written in Healthy People 2010,2 and a stated priority of many national medical organizations including the American Academy of Pediatrics and the Society for Adolescent Medicine.3- 5 The transition process places an emphasis on providing health care in a coordinated, uninterrupted manner1; thus continuous and affordable health insurance and a usual source of care are posited to be critically important to successful transitions.4 The increasingly complex task of navigating changes in health care financing and delivery presents an important challenge for young adults, their families, and pediatric and adult health care providers.6- 12
The research literature focusing on health care access for young adults with chronic health conditions is sparse. Young adults are excluded or constitute only a small proportion of the populations in studies of children or adults with disabilities, and the last comprehensive study of young adults drew on data from 1984.13 Given the growth of this population and recent changes in health care financing and delivery, the aim of this study was to assess health insurance coverage and health care access of young adults with disabling chronic conditions using a national data source.
We analyzed responses from young adults aged 19 to 29 years who were participating in the National Health Interview Survey (NHIS) from 1999 to 2002. The NHIS is an ongoing, cross-sectional, national household survey sponsored by the National Center for Health Statistics. The purpose of the survey is to collect information about the health and health service use of the civilian noninstitutionalized population in the United States.14 The sampling plan uses a multistage area probability design to yield nationally representative estimates.
The NHIS consists of a group of surveys designed to collect data on households and individuals. Data for the respondents in this study were drawn from the Person-Level file (containing sociodemographic and basic health information for each member of a household collected directly from individuals or from other adult members if the individual is unable to answer) and the Sample Adult file (containing additional health-related data obtained from 1 randomly selected adult in each household). Information in the Sample Adult file is based on self-report unless the respondent is incapable of providing the information. We calculated a response rate of 72.4% for all adults selected for the Sample Adult questionnaire during the 4 years studied.14
Young adults with disabling chronic conditions were identified by questions asking if physical, mental, or emotional problems resulted in limitation or inability to work, difficulty walking without special equipment, or limitations in activities of daily living (bathing, dressing, getting in/out of bed or a chair, using the toilet, eating, or getting around the home), instrumental activities of daily living (household chores, doing necessary business, shopping, or getting around), or any other activity. Chronic conditions were those that are not cured once acquired or that have been present for at least 3 months. Conditions related to pregnancy were not considered chronic. Young adults without disability reported none of the activity limitations. These young adults may or may not have chronic conditions. We excluded 86 participants whose limitations could not be attributed to a chronic condition.
The dependent variables were responses to questions about unmet health needs, health professional contact, and usual source of health care. Participants were asked if they delayed or missed needed medical care or failed to fill a prescription in the last year because of cost. They were also asked when they last talked with a health professional about their health and if there was a place they usually went to when sick or in need of health advice. For this study, we categorized young adults according to whether they reported having any health professional contact during the past year. Young adults without a usual source of health care did not identify a source of care other than the emergency department.
We used survey data to identify health insurance coverage at the time of the interview. The uninsured had no coverage through private health insurance, Medicare, Medicaid, State Children’s Health Insurance Plan, or other public programs. Young adults with unknown coverage status (n = 159) were excluded from analyses.
We used NHIS-recoded variations of survey items to ascertain participants’ educational attainment, marital status, household income, and major activity in the week prior to the survey. Household income was provided as a ratio of income to the US Census Bureau’s poverty threshold for the survey year after considering overall family size.15 The 20% of young adults in the study who did not provide household income data were excluded from multivariate analyses.
Sociodemographic and insurance characteristics for 1101 young adults with and 22 481 without disabling chronic conditions are presented in Table 1. Bivariate analyses show the relationship between unmet health care needs and insurance status for young adults with and without disabling chronic conditions (Table 2). We used statistical weights provided by the NHIS to present population estimates, percentages, and standard errors reflecting United States population totals in the text and tables. Multivariate analyses are presented to estimate the odds of reporting unmet health care needs for the 885 young adults with and 17 903 without disabling chronic conditions who provided complete information, stratified by insurance status and adjusting for the sociodemographic variables (Table 3). To account for the complex sampling design employed in the NHIS, final analyses were conducted using SUDAAN statistical software (Research Triangle Institute, Research Triangle Park, NC).16 The study protocol was approved by the institutional review board of Vanderbilt University (Nashville, Tenn).
Among young adults participating in the NHIS from 1999 to 2002, 4.7% had a disabling chronic condition. Of this group, 64% reported a work limitation or inability to work. The chronic conditions most frequently leading to disability included musculoskeletal problems (33%), emotional problems including depression and anxiety (18%), and lung problems including asthma (12%).
Compared with peers without disability, young adults with disabling chronic conditions were poorer, reported lower educational attainment, and were less likely to be working (Table 1). Uninsurance rates were not significantly different for young adults with and without disabling chronic conditions (26% and 28%, respectively); however, young adults with disabling chronic conditions were more likely to have Medicaid and less likely to be privately insured.
Uninsured young adults with disabling chronic conditions were 4 times more likely than insured young adults with disability to report unmet health care needs and no usual source of health care, and 2 times more likely to have no health professional contact in the last year (Table 2). Over two thirds of young adults with disabling chronic conditions either delayed or missed needed care owing to the high cost and 45% identified no usual source of care.
After controlling for sociodemographic characteristics, uninsured young adults with disabling chronic conditions had 8 times higher odds of delaying or missing needed care than insured young adults with disabling chronic conditions (Table 3). The uninsured with disabling chronic conditions also had twice the odds of having no health professional contact and 6 times the odds of having no usual source of health care relative to insured peers. The odds of delaying or failing to get medical care owing to cost were more than 20-fold greater for uninsured young adults with disabling chronic conditions than for insured young adults without disability.
In this study, we demonstrated that uninsurance is common among young adults with disabling chronic conditions and that it is significantly associated with barriers to health care access. Five percent of young adults reported that they had a disabling chronic condition, corresponding to an estimated 2 million young adults nationally. The estimates from this study are similar to those by the US Census Bureau (5.3% of 15- to 24-year-olds).17 In studies of children and adults, individuals with disabling chronic conditions have been shown to have higher health care use than healthy peers or those with chronic conditions or disability alone.18,19
Given their presumed greater need for health care services, it is troubling that 1 of every 4 young adults with a disabling chronic condition reported being uninsured. This proportion was essentially the same as that of young adults without disability. We would anticipate that young adults with disabling chronic conditions would have greater incentive to maintain health insurance coverage than peers without disability, however, the findings of this study suggest several reasons that these young adults may have particular difficulty doing so. Young adults with disabilities were significantly worse off than peers without disability in terms of poverty, educational attainment, and employment—all socioeconomic characteristics associated with uninsurance and poor health care access.9,20- 26 Most young adults obtain private insurance through employment-based coverage or dependent coverage as a full-time student. Only 54% of young adults with disabling chronic conditions were attending school or working, which may explain why only 40% of these young adults hold private health insurance coverage.
Medicaid and other public insurance programs play an important role in covering children with disabling chronic conditions, however, these public programs are frequently much more limited in size and scope for adults. For example, more stringent adult requirements mean that about one third of older adolescents who qualify for Supplemental Security Income as children will lose these benefits during a redetermination process at age 19.27 Adult applicants for Supplemental Security Income must demonstrate an inability to work and have a monthly income of no more than $700.28 Because many young adults with disabling chronic conditions are able to work (including 45% of the young adults in this study), meeting the requirements for Supplemental Security Income benefits as an adult may be particularly difficult.29 State Children’s Health Insurance Plan may provide coverage for some young adults with disabling chronic conditions, however, increasing budget deficits and resultant cutbacks by some states may further limit the availability of this coverage.30
Uninsurance was associated with health care access barriers for all young adults, but particularly for those with disabling chronic conditions. Uninsured young adults with disabling chronic conditions had 8 times greater adjusted odds of reporting unmet health care needs and 6 times greater odds of having no usual source of care relative to insured respondents with disabling chronic conditions. In this population, delayed or forgone care may represent missed opportunities to improve functioning, provide preventive services, or delay disease progression. Nearly half of uninsured young adults with disabling chronic conditions did not identify a usual source of health care. Beyond being a necessary component for transitioning young adults to developmentally appropriate care, lacking a usual source of care has been associated with poorer access to preventive services, longer hospitalizations, and increased use of emergency departments.31- 33
The findings of this study should be considered in light of several limitations. These analyses rely on self-report and may be subject to recall or response error. Because the data are derived from a cross-sectional survey, we are limited in our ability to conclude that uninsurance resulted in the reported unmet health care needs. Finally, we would have preferred to analyze differences in unmet health care needs among those with different types of health insurance coverage (Medicaid, private, etc), but had insufficient sample size to support this level of analyses.
Five percent of young adults in this study had a disabling chronic condition. Despite increasing attention to issues of health care transition for young adults with disabling chronic conditions, the results of this study suggest that uninsurance is as common for young adults with disabling chronic conditions as for those without disability. Moreover, the uninsured disproportionately experience health care access barriers. Improving health insurance coverage options and ensuring continuity of coverage during young adulthood may improve health care access in this population. Additional research is needed to identify barriers to maintaining health insurance coverage and the financial and health effects of barriers to health care for young adults with disabling chronic conditions.
Correspondence: S. Todd Callahan, MD, MPH, Division of Adolescent Medicine, Vanderbilt Children’s Hospital, 11119 Doctors’ Office Tower, Nashville, TN 37232 (firstname.lastname@example.org).
Accepted for Publication: August 11, 2005.
Funding/Support: This study was supported in part by the Vanderbilt Physician-Scientist Development Program (Dr Callahan).
Callahan ST, Cooper WO. Access to Health Care for Young Adults With Disabling Chronic Conditions. Arch Pediatr Adolesc Med. 2006;160(2):178-182. doi:10.1001/archpedi.160.2.178