BACKGROUND: Children with Special Health Care Needs (CSHCN) increasingly live into adulthood, and every year approximately 500,000 American youth transition from pediatric to adult health care system. Health Care Transition (HCT) for Youth with Special Health Care Needs (YSHCN) has emerged as a significant event in the life course of this population. The overarching goal for HCT is to provide high quality, coordinated, uninterrupted health care which is responsive to the needs and desires of the patient. Although improvements have been seen in health care quality of the general population, differences still persist in health care quality among CSHCN in racial and ethnic minority groups. Children with Intellectual and Developmental Disabilities (ID-DD) are an important subpopulation of CSHCN because of their increasing prevalence due to autism and attention deficit hyperactivity disorder, high service needs, cost, and societal impact. A few researchers have focused on transition preparation for all YSHCN, but not on racial and ethnic (e.g., African American, Latino) disparities in health care transition and quality for youth ages 12-17 with ID-DD. OBJECTIVE: The purpose of this study was to explore the racial and ethnic disparities in transition to adult health care and quality of care for youth ages 12-17 with ID-DD. METHODS: The 2009–2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17, 114 respondents (parents of CSHCN) ranging in age from 12 to 17 years old. They were asked about transitioning to an adult provider, changing health care needs, maintaining insurance needs, and increasing responsibility for self-care. They were also asked about having a personal doctor or nurse, doctors spending enough time with them, doctors listening carefully to the parent, providers showing sensitivity about family values; the parent receiving enough information from the doctor, and the doctor making the parent feel like a partner. The researcher analyzed the association of selected characteristics with successful transition and quality of health care for White, Black, and Latino children ages 12-17 with ID-DD. The study was guided by Andersen’s (1995) Behavioral Model of Health Care Use. Bivariate analyses were conducted and consisted of seven chi-square analyses. For each chi-square analysis, the data split to include only children with ID-DD. RESULTS: The study was comprised of youth with ID-DD ranging in age from 12 to 17 years old, with an average mean age of 14.55 years old (M=14.55, SD=1.74). Results of the chi-square analysis indicated the proportions of children transitioning to adult health care for each ethnic group were not significantly different than expected (χ2(3) = 5.41, p = 0.144). Results also indicated that only four percent of children with ID-DD successfully transitioned to adult health care. Four of the six chi-square analyses related to the quality of health care were indicative of significant deviations from expected responses (doctors and other health care providers spending enough time with the child χ 2(12) = 79.74, p < 0.001; listening carefully (χ2(15) = 63.42, p < 0.001); showing sensitivity to family values (χ2(15) = 34.44, p = 0.003); and making the family feel like a partner in care (χ 2(12) = 33.89, p <0 .001). A multiple linear regression was conducted to determine the relationship between the occurrence of an intellectual or developmental disability and the transition to adult health care, while controlling for predisposing (e.g., race and ethnicity, gender, parents education, and family structure), enabling factors (e.g., family income, health insurance status, and patient-centered medical home). A preliminary F test on the regression indicated a significant model fit (F(12, 10,387) = 67.76, p < 0.001). Furthermore, a multiple linear regression was conducted to determine the relationship between the occurrence of a disability and the quality of health care, while controlling for predisposing and enabling factors. The preliminary F test indicated a significant model (F(12, 17,101) = 328.62, p < .001). CONCLUSIONS: Youth with ID-DD, particularly those who are Latino and Black, face greater challenges in transitioning to adult health care and receiving a quality of care compared to other children with special health care needs in the United States. Addressing specific medical home components might reduce racial and ethnic disparities. Future research that examines the association between the HCT and family/professional partnerships in family-to-family health information centers (ACA 5507(b)) will be needed to ensure quality outcomes for youth with ID-DD.
|School Location:||United States -- California|
|Source:||DAI-B 75/08(E), Dissertation Abstracts International|
|Subjects:||Public health, Ethnic studies, Epidemiology|
|Keywords:||Children with special health care needs, Developmental disabilities, Health care quality, Health care transition, Intellectual disabilities|
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