Assessing needs of adult cleft lip and palate patients

December 18, 2013
From left to right: Dr. Emet Schneiderman and Maureen Libby hope research will lead to cleft palate center at TAMBCD.

From left to right: Dr. Emet Schneiderman and Maureen Libby hope research will lead to cleft palate center at TAMBCD.

Dr. Maureen Libby, a resident in graduate prosthodontics at Texas A&M University Baylor College of Dentistry, hopes her master’s thesis research will lead to a greater understanding of the health needs of adults with cleft lip and cleft palate in North Texas.

Dr. Emet Schneiderman, associate professor in biomedical sciences and Libby’s faculty mentor, has some related plans in mind. Perhaps the research results could demonstrate the need for an adult cleft clinic at the dental school. But first, data is needed on potential patients, because state record-keeping ceases after age 18.

According to the numbers from the Texas Birth Defects Registry, about one out of every 570 children born in North Texas will have a cleft lip and/or palate. Using Texas Health Department statistics, Schneiderman estimates that in 2013 alone, at least 180 children with clefts in this region will reach adulthood. These individuals may have a host of dental and medical needs as adults, says Libby, such as swallowing complications, speech therapy, psychosocial concerns and even learning disabilities.

Realizing an adult cleft clinic at TAMBCD would require help from inside the school and out, drawing expertise from restorative sciences, oral and maxillofacial surgery and orthodontics residents and faculty, as well as plastic surgeons, speech therapists and social workers. Collaboration with neighboring hospitals and health education programs would also be an essential component.

Grafts, dental bridges and lip and nose surgery revisions are just a few of the common treatments that would be provided.

“As residents we don’t get exposed to this type of patient,” says Libby. “Establishing a center here would allow all of us to work together.”

Schneiderman praises the emphasis on interprofessional care by the Pediatric Plastic and Craniofacial Surgery Team at Children’s Medical Center of Dallas, which periodically gathers a dozen patients and multiple specialists on a single day. He envisions a similar model on a smaller scale at TAMBCD. Dental school residents already treat approximately half of the cleft patients seen at Children’s.

More than two dozen faculty members and administrators, as well as Dr. Alex Kane, who is in charge of the plastic and craniofacial surgery team at Children’s, have already gotten behind the concept. At the outset, half-day clinic sessions could occur at TAMBCD twice a year, at which point follow-up appointments would be made. Just one crucial detail remains: funding. But in order to attract benefactors, concrete data is required.

Libby distributed a survey in September to tens of thousands of potential respondents at Texas A&M University, the dental school and various social media platforms. The intent is for anyone in this patient population to participate, offering crucial information about surgical treatment, continuing health care concerns as well as satisfaction with appearance. Data from the survey will be collected and analyzed this winter.

“The goal is to figure out the current medical and dental needs of adults with a history of cleft lip and palate,” says Libby. “Statistically it seems there should be a large population in our area, but we don’t see them.”

— Jennifer Fuentes