Dentistry's Role in Improving Cleft Lip and Palate Treatment Outcomes
Ross E. Long, Jr., DMD, MS, PhD
The expected outcomes of treatment for patients with cleft lip and palate have improved dramatically over the past 75 years. Perhaps of greatest significance has been the establishment of a standard of care, recommended by the American Cleft Palate-Craniofacial Association, which includes the need for comprehensive management by a multidisciplinary team of medical, dental, and ancillary specialists from a variety of healthcare fields. The dental profession historically has played a pivotal role in identifying the need for this "team treatment" concept and establishing the foundation for this coordinated interdisciplinary approach.
In the 1920s Dr. Herbert K. Cooper established one of the first orthodontic practices in Pennsylvania in the city of Lancaster. Being one of the few "dental specialists" in practice, he had many patients referred to him with severe dental and facial disfigurement secondary to congenital orofacial anomalies. Dr. Cooper realized that successful treatment for these difficult problems resulting from poor prior surgical management and an absence of a multidisciplinary treatment team could only be achieved through the coordinated efforts of many medical, dental, and speech specialists. In 1938, he organized a team dedicated solely to treating patients with congenital and acquired orofacial anomalies and established the Lancaster Cleft Palate Clinic (LCPC). Dr. Cooper's original idea of a multidisciplinary/interdisciplinary medical, dental, and speech team has further expanded to include a wider range of additional specialties.
Cleft lip and palate is now recognized as one of the most common major birth defects in the United States, with estimates by the Centers for Disease Control (CDC) of 1 in 575 live births. Comprehensive management requires care throughout infancy, childhood, adolescence, and young adulthood, thereby making it a costly burden on the US healthcare system. Since its founding, the LCPC and its affiliate Penn State University Hershey Medical Center have served not only as the site for periodic total team evaluations of patients with clefts, but also for surgery, general and specialty dental care (orthodontics, prosthodontics, maxillofacial prosthetics), speech therapy, and infant feeding instruction.
Most recently, the LCPC has become the coordinating center for the Americleft Project, which is the first North American intercenter collaborative comparison of treatment outcomes among major cleft-craniofacial centers in the United States and Canada. Started in 2006 and supported by the American Cleft Palate-Craniofacial Association and the Cleft Palate Foundation, the goal of the Americleft Project is to identify best practices in the surgical, orthodontic, and speech/hearing treatment of children with clefts.
The Americleft Project was initiated at the LCPC with participation from Toronto's Hospital for Sick Children (SickKids) and Dalhousie University in Canada; St. Vincent's Hospital in Indianapolis, IN; Ohio State University in Columbus, OH; and Cooper University Hospital in Camden, NJ. Using rigid methodological protocols to ensure control of bias and data integrity, comparisons have now been completed on mixed dentition dental arch relationship, skeletal morphology, nasolabial appearance, alveolar bone graft outcomes and speech ratings on patients with complete clefts of the lip, alveolar ridge, and palate. These studies have been published in the Cleft-Palate Craniofacial Journal. The most significant findings include the following: 1) best outcomes are associated with centers with conservative infant surgical protocols and centralized, standardized team management; 2) best outcomes are associated with surgeons with high volumes of patients; 3) the inclusion in infant management protocols of passive presurgical infant orthopedic appliances to improve the alignment of cleft maxillary segments before primary surgical repair produced no measurable benefits; 4) the inclusion of primary alveolar repair such as primary bone grafting was associated with significantly less favorable dental arch relationships and skeletal morphology; 5) the use of methods used to mold the cartilages of the nose prior to surgery may be an alternative to the use of secondary surgical revisions of lip and nose.
With much more to do in the area of defining best practices in cleft lip and palate treatment, the LCPC continues to carry out the clinical care of these patients with systematic and standardized clinical record-taking protocols so that continuous quality assurance and quality improvement processes through these intercenter treatment outcome comparisons can be assured. In addition, the LCPC is now the data archive for the Americleft Project so that other centers wishing to participate in this valuable approach can have access to the accumulated data and processes that are in place to carry out such studies.
About the Author
Ross E. Long, Jr., DMD, MS, PhD
Director of the Lancaster Cleft Palate Clinic