Dental News - US children with orofacial clefts face healthcare barriers

Dental Tribune International

Thu. 31 May 2012

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CHARLOTTE, N.C., USA: For the first time, researchers in the U.S. have conducted a qualitative survey among almost 100 mothers of children with orofacial clefts (OFC) with respect to their perception of barriers to medical care. Almost half of the respondents commented negatively on financial, structural and personal barriers with regard to care in the state of North Carolina.

From May to October 2006, researchers surveyed 98 mothers whose children were registered in the North Carolina Birth Defects Monitoring Program as having been born with OFC between 2001 and 2004. The participants assessed the quality of care received in North Carolina in the previous 12 months.

The survey revealed that 12.2 percent of the respondents felt that their child had not received the medical care he or she needed. While the majority (64 percent) reported that primary cleft and craniofacial care was often or almost often effective in the period studied, a considerable 39 percent perceived access to medical care for their child as problematic.

About 20 percent of the respondents mentioned having experienced financial barriers to cleft care, and structural barriers, such as limited access to health services, were mentioned by 26.5 percent of the respondents. Among others, insurance not covering the care needed, having to take time off work, transportation issues and long waiting periods were among the primary reasons for negative reports.

One mother said that she had not been told by the staff at her child's birth hospital about any cleft services. "The mountain region has a complete lack of care for anyone with facial differences," stated another mother in the survey.

According to the researchers, treatment of OFC traditionally relies upon specialized teams or centers, which are not available in certain geographic locations.

"Health insurance companies, health departments, craniofacial and cleft teams and centers, and birth defect registries should work collaboratively with families and existing healthcare systems to provide identification and referral of children with OFC to needed services," they concluded.

According to the Centers for Disease Control and Prevention, more than 7,000 babies in the U.S. are born with cleft lip or cleft palate or both every year. The birth defect is characterized by the malformation of a baby's lip or mouth, which occurs during early pregnancy. Children born with a cleft lip or palate usually have problems with feeding, talking and their teeth.

The study was conducted by researchers at the University of North Carolina at Charlotte and at Chapel Hill, as well as at the University of Pittsburgh, Pennsylvania. It was published in the May issue of the Cleft Palate–Craniofacial Journal, an official publication of the American Cleft Palate–Craniofacial Association.

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