Demographic Characteristics, Care, and Outcomes for Children with Oral Clefts in Three States Using Participants from the National Birth Defects Prevention Study

OBJECTIVE: The primary objective of this study was to evaluate whether there were differences in the characteristics and outcomes of care for children with oral clefts (OCs) among population-based samples in three states.

DESIGN: Data on the health status and on speech and esthetic outcomes were collected using structured telephone interviews conducted during 2005-2006 with mothers of children with OCs aged 2 to 7 in Arkansas, Iowa, and New York.

PARTICIPANTS: Mothers of children born with nonsyndromic OCs on or after January 1, 1998, and on or before December 31, 2003, in Arkansas, Iowa, or New York. Subjects were identified through their participation in the ongoing National Birth Defects Prevention Study.

MAIN OUTCOME MEASURES: Demographic characteristics, rating of cleft care, severity of condition, health status, esthetic outcomes, and speech problems were evaluated by state of residence. RESULTS: Children with OCs from Arkansas were from lower income families, and their parents were less likely to be married. Children with OCs from Arkansas were more likely to have special health care needs and to require mental health care. Few differences were found across states in type of cleft, severity of cleft, or outcomes of cleft care.

CONCLUSIONS: Combining results from population-based samples across multiple studies increases the variability of sample characteristics. Including multiple states can be an efficient way to learn more about the outcomes of medical care for less common conditions such as oral cleft.