Timeliness of Services among Infants with Orofacial Clefts in North Carolina, 1995-2002

Background: In 1993, the American Cleft Palate-Craniofacial Association (ACPA) developed parameters of care for patients with orofacial clefts (OFC). No study has examined timeliness of services according to these guidelines.

Objectives: To determine: 1) percentage of infants with OFC who received cleft surgery; 2) age surgery occurred; 3) percentage of infants who received specialized services; and 4) factors associated with timely cleft surgery.

Methods: North Carolina vital statistics, birth defects registry, and Medicaid enrollment and paid claims were linked to identify children with OFC born 1995-2002 continuously enrolled in Medicaid through age two (n=406). All current procedural terminology and diagnostic-related group codes for services and service receipt dates were employed. Multivariate analysis was used to examine associations between selected sociodemographic characteristics and timely cleft surgery.

Results: About 78% of infants with OFC had cleft surgery within 18 months of life. Of those infants who received timely surgery, mean age surgery occurred was five months. About 28% of infants received audiology services, 24.4% received otolaryngologic care, 51.1% received speech and language therapy, 12.4% received psychological services, and 15.9% received dental care. Timely receipt of cleft surgery varied significantly by child's gender, marital status, receipt of maternity care coordination, prenatal care source, number of living children, and perinatal care region.

Discussion/Conclusion: Most infants with OFC in North Carolina received cleft surgery within ACPA recommendations. Many infants did not receive other necessary specialized services. Efforts need to be addressed to increase timely receipt of services for this population to improve their health outcomes.