Cleft and Craniofacial Multidisciplinary Team Clinic: A Look at Attrition Rates for Patients With Complete Cleft Lip and Palate and Nonsyndromic Single-Suture Craniosynostosis

Abstract

Objective: To evaluate attrition rates prior to expected completion of team care for children with complete cleft lip and palate (cleft) or nonsyndromic single-suture craniosynostosis (synostosis). Design: A single-institution retrospective review of attendance data from 2002 to 2016. Setting: Single cleft and craniofacial center in the United States. Patients/Participants: A sample of 983 patients with either cleft or synostosis. Patients who were more than 2 to 3 years from their last visit were considered lost to follow-up. Patients with cleft older than 16 years or synostosis over 11 years were considered graduated from team care. Results: Survival analysis shows that in our patients with cleft, 25% leave before age 8 and over 60% are lost from team by age 16. In patients with synostosis, 25% leave before age 6 and 45% are lost by age 11. Cox regression showed underrepresented minorities being 1.7 times more likely to become lost in the cleft group (hazard ratio: 1.66, 95% confidence interval [CI]: 1.01-2.74). Conclusions: Overall, attrition rates were high at our institution. Many patients are lost to follow-up prior to receiving key medical interventions. Improved family education and personalized care are needed to help ensure continuity of care.