Nearly 20 percent of U.S. adolescents have special health care needs that require health or health-relatedservices beyond that required by children generally. During adolescence, these youths begin the transitionfrom parental management to self-management of their health and healthcare and from pediatric to adult careproviders. Health literacy is an important tool in this transition but little is known about patterns of health literacyin adolescents with special healthcare needs and its importance in self care. Our long-term goal is to improvethe quality of pediatric healthcare and to reduce health disparities through innovative approaches to adolescentcare. The objective of this study is to conduct a large-scale study of health literacy and health outcomes inteens with special health care needs. Specifically, this study aims to: 1) Identify mediators and moderators ofracial disparity in health literacy in adolescents with special health care needs. Relationships tested will includeprimary language spoken at home, rural/urban residence, and parental education; 2) Assess the relationshipbetween adolescent health literacy, parent health literacy and effective planning for the healthcare transitionfrom adolescence to adulthood; and 3) Assess the relationship between adolescent health literacy, parenthealth literacy, and adolescent health indicators including health-related quality of life and healthcareutilization. To accomplish these aims we will recruit 600 dyads of a teen, age 15-17, with special health careneeds and a custodial parent from enrollees in a large, diverse Medicaid managed care plan serving centraland southwestern Ohio. Participating teens and parents will independently complete assessments ofdemographics, child health-related quality of life, functional health literacy, medical home status, andhealthcare transition planning. Health care utilization information in the year following the initial assessment willbe measured using administrative encounter data. Analyses will test the hypotheses that racial disparities existin health literacy and that disparities are mediated by parental education and other variables. We will also testthe hypothesis that disparities in health literacy are associated with disparities in transition planning andinappropriate health services use. Results from this project will be used to design interventions that improvethe healthcare transition process and health services use by expressly addressing issues of health literacy andto inform health care providers, payors, public health professionals, and policy-makers of the extent andpredictors of health literacy limitations and of the health and social costs associated with limited health literacyin this population.
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