The Translating Duke Health Children’s Health & Discovery Initiative (CHDI) has awarded Duke surgeons $100,000 over the next two years for a project to improve the care of patients with cleft lip and/or palate in North Carolina.
Alexander C. Allori, MD, MPH, Assistant Professor of Surgery, Division of Plastic, Maxillofacial & Oral Surgery, Duke Children’s Hospital, will lead the initiative. Jonathan Routh, MD, MPH, Associate Professor of Surgery and Pediatrics, Division of Urology, Duke Children’s Hospital, is a co-investigator on the grant.
Other collaborators include experts from the Duke Global Health Institute, Department of Population Health Sciences, Department of Biostatistics and Bioinformatics, the NC Department of Health and Human Services, and the hospitals at the University of North Carolina at Chapel Hill and Wake Forest. The research team will also include an advisory board with numerous stakeholders, including grown patients and parents of children with cleft lip/palate.
Cleft lip and/or palate is one of the most common birth defects worldwide. Each year in the United States, approximately 2,650 babies are born with a cleft palate and 4,440 babies are born with a cleft lip and/or palate, according to the Centers for Disease Control and Prevention. Children with a cleft lip and/or palate may have problems with feeding and speaking and may develop dental issues, ear infections, and hearing loss.
Children with cleft lip also carry the visible stigmata of the disorder. Care for patients with cleft lip and/or palate is complex and provided at stages throughout childhood, from birth to young adulthood. Due to its complexity, this care is best coordinated by a multidisciplinary cleft team. However, many factors, that are as yet poorly understood, may negatively impact patient outcomes.
The new grant aims to study the provision and utilization of cleft care by studying electronic health record (EHR) data and outcomes data from the three approved multidisciplinary teams in North Carolina between 2003-2016: Duke University, UNC–Chapel Hill, and Wake Forest University. Specifically, by studying patient data for infants through adolescents, the research team aims to:
- Determine whether any regions or demographics in North Carolina are underserved based on whether they received team-based or community-based care
- Develop methods for comparing patient outcomes
- Model attrition rates and team-to-team transfer rates
- Assess team compliance with guidelines from the World Health Organization (WHO) and the American Cleft Palate–Craniofacial Association (ACPA)
By measuring and comparing cleft team performance and outcomes, the team hopes to identify methods that will make high-quality cleft care more accessible to those patients in need. The project will also formally establish the Americleft Quality Improvement and Research Network (ACQUIREnet), a regional collaborative that will initially include the three institutions in North Carolina but is hoped will grow to encompass all approved cleft teams in surrounding states. ACQUIREnet will engage in continuous quality improvement and prospective clinical research.