In 1987, the Surgeon General of the United States issued a report stating that children with special health care needs required comprehensive coordinated care that should be readily accessible to these children and their families (Koop, 1987). This lead to the creation of interdisciplinary care in many healthcare centers.
The Foundation for Faces of Children endorses a team approach to the treatment of children with craniofacial conditions. There are several variations on team care, in addition to the principal designations of cleft palate teams, craniofacial teams and multidisciplinary teams.
An interdisciplinary team consists of several specialists who perform independent evaluations of your child (usually in the same location during the same appointment time) and then meet together to review findings and develop a joint plan of action. The team leader or other designated team member meets with the family to explain the assessments and the team’s joint recommendation for treatment. Finding such a team in your area may take a bit of research. It is important to remember that not all cleft lip/palate and craniofacial teams have the same range of specialists or level of experience.
National Survey Finds Wide Disparities in Craniofacial Care
The first and only comprehensive national study of the then 296 registered teams in North America was published in 1998. It found wide disparities in the services offered, the number of patients treated each year, and follow-up services.
Only 50 percent of the teams measured treatment outcomes through a quality assurance program. Only six teams followed or treated more than 2000 patients per year while another 11 teams treated 1000-2000 patients.
Among the 247 teams responding to the survey, the average was 17 new cleft lip repairs a year. Though twenty years have passed, many treatment centers may still perform very few repairs annually, and many teams may not have the professional experts to fulfill the interdisciplinary needs.
This variability in the range of services offered underscores the importance of learning about a care team in advance and making sure it can address the full range of your child’s needs.
Following the surgeon general’s recommendations, the American Cleft Palate-Craniofacial Association published the first “Parameters of Care” in 1993 as a supplement to the Cleft Palate-Craniofacial Journal, and then formalized those recommendations in a separate publication revised in 2000, 2007, 2009, and 2018. The Foundation encourages you to read the latest edition of the “Parameters for evaluation and treatment of patients with cleft lip/palate and other craniofacial differences.”
Cleft Palate and Craniofacial Teams in the United States and Canada: A National Survey of Team Organization and Standards of Care
Ronald P. Strauss, D.M.D., Ph.D.
The Cleft Palate- Craniofacial Journal, Volume 35, No.6, 473-480, 1998.
Parameters for the Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies
American Cleft Palate-Craniofacial Association.
Cleft Palate-Craniofacial Journal 2018.