Academic achievement of children and adolescents with oral clefts

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DESCRIPTION (provided by applicant): Cleft lip and/or palate (CL-P) are common birth defects occurring in about 1/500 to 1/2500 births. Nonsyndromic (NS) forms occurring without other major birth defects or syndromes are the most common and impose large early and long-term adverse effects on the health of affected individuals by increasing the risks for mortality and certain chronic conditions. NSCL-P may also reduce educational, psychosocial, and economic achievement. Understanding the NSCL-P effects on educational achievement is needed for understanding the pathways through which NSCL-P affects health and psychosocial and economic performance given the important effects of education on these outcomes. Furthermore, obtaining accurate estimates of the NSCL-P effects and how they vary by socioeconomic, demographic and health backgrounds is essential for identifying needs and developing cost-effective policies and interventions to improve the wellbeing of affected individuals. However, much remains unknown about the NSCL-P effects on the educational achievement of affected individuals. A few studies report adverse effects on cognitive performance and/or educational achievement early in life and throughout adulthood. However, these studies are limited by small clinic-based samples, lack of appropriate control groups, and cross-sectional designs that ignore changes over time. Furthermore, none of these studies identifies socioeconomic, demographic or health factors that may interact with and modify the effects of NSCL-P on educational achievement. The proposed study will identify the impacts of NS CL-P on the educational achievement of children and adolescents with oral clefts and assess how these impacts vary by socioeconomic, demographic and health backgrounds. The study is highly innovative by employing a unique, existing data infrastructure to implement the study Specific Aims and by addressing several of the limitations of previous studies. We will study a large population-based sample of individuals with oral clefts from Iowa identified through the Iowa Registry for Congenital and Inherited Disorders (IRCID) and multiple control groups including siblings, classmates, and unaffected children from the National Birth Defects and Prevention Study (NBDPS). This multi-control group approach provides significant methodological advantages over previous studies. We measure educational achievement using the objective standardized Iowa school tests that were developed and are maintained at the University of Iowa and have high reliability and validity. We will evaluate scores on Reading, Mathematics, Language, and Science as well as overall composite scores. We will also link data from birth records and NBDPS survey data on health and socioeconomic and demographic characteristics and risk factors during pregnancy. Furthermore, we study the effects of NSCL-P on educational achievement and its changes with age using longitudinal designs. The study will add significant knowledge about the NSCL-P effects on educational achievement and about ways to improve the long-term outcomes of affected individuals.