Outcomes of Care and Health and Well-Being for Children Ages 2-12 with Craniofacial Abnormalities

With funding from the National Foundation for Facial Reconstruction, this study was conducted to describe and evaluate access to and use of medical, surgical and other essential health services and health-related care outcomes among young children born with oral clefts, craniosynostosis or microtia (anotia) in three states: Iowa, New York and Arkansas. A follow up to the National Birth Defects Prevention Study, participants were recruited from state birth defects registries. The study was conducted in collaboration with researchers at the Iowa Registry for Congenital and Inherited Disorders, the University of Arkansas for Medical Sciences, and the New York State Department of Health. It is believed that many children with craniofacial malformations may have unmet needs for care due to barriers such as the high cost of reconstructive procedures, lack of timely and appropriate referrals, lack of or inadequate insurance coverage, and denial of coverage for essential surgical procedures and other services because they are deemed "cosmetic" by insurance companies or HMOs. Furthermore, the use of state birth defects registry samples allows extrapolation of findings to a greater degree than those obtained from clinic-based samples. Thirty-minute structured interviews were conducted with the biological mothers of children identified through the Arkansas, Iowa or New York birth defects registries as having been born between 1/1/98 and 12/31/03 with one of three types of malformations (idiopathic cleft lip and/or palate, craniosynostosis, or anotia or microtia). Moreover, to be eligible for inclusion, children had to live with their English-speaking, biological mothers in one of the three states. The interview questions addressed children's access to and use of general and specialized medical care, dental, behavioral and vision care, audiology and speech therapy. In addition, it included questions about child's current health status, history of condition-related surgical care, and satisfaction with care received immediately after diagnosis. Registry data provided clinical information on gestational age, prenatal care, and ultrasound diagnosis. Key findings Less unmet need than expected for surgical care, but significant unmet needs for dental care. Prenatal diagnosis did not significantly improve outcomes or rating of care.