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

Public Health Relevance

One in six US teens has a special healthcare need that causes them to use more healthcare services than other youths their age. These youths and their families need health literacy skills to navigate the healthcare system. This study measures the presence of racial and socio-demographic disparities in health literacy and tests whether limitation in health literacy are a barrier to the transition to adult care.

National Institute of Health (NIH)
National Institute on Minority Health and Health Disparities (NIMHD)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Alvidrez, Jennifer L
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Nationwide Children's Hospital
United States
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Chavez, Laura J; Grannis, Connor; Dolce, Millie et al. (2018) Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life. Acad Pediatr 18:662-668
Manganello, Jennifer A; Colvin, Kimberly F; Chisolm, Deena J et al. (2017) Validation of the Rapid Estimate for Adolescent Literacy in Medicine Short Form (REALM-TeenS). Pediatrics 139:
Sarkar, Madhurima; Sanders, Lee M; Kelleher, Kelly J et al. (2016) Psychosocial Health, e-Health Literacy, and Perceptions of e-Health as Predictors and Moderators of e-Health Use Among Caregivers of Children with Special Healthcare Needs. Telemed J E Health 22:123-131
Chisolm, Deena J; Sarkar, Madhurima; Kelleher, Kelly J et al. (2015) Predictors of Health Literacy and Numeracy Concordance Among Adolescents With Special Health Care Needs and Their Parents. J Health Commun 20 Suppl 2:43-9