Follow-Up Care Barriers for Patients with Orofacial Clefts

Objective The aim of this study was to evaluate whether a patient with a cleft's age, associated syndrome, cleft phenotype or travel distance affects their follow-up rate. Design This study is a retrospective review of patients with CL/P treated by a craniofacial clinic. Setting The setting was a craniofacial clinic at a tertiary care university hospital. Patients, Participants Candidates were patients seen by the craniofacial clinic between January 2007 and December 2019. An initial pool of 589 patients was then reduced to 440 due to exclusion criteria. Interventions None Main Outcome Measure(s) The outcome measure was actual patient attendance to the craniofacial team compared to the team goal expectation of annual return visits. Results The mean age of participants at the end of the study was 9.0 ± 5.4 years with a mean follow-up period (total possible follow-up period length based on patient age at presentation and study window) of 5.5 ± 3.6 years. There was no association between cleft phenotype, type of syndrome, or distance to the clinic with attendance. Children with syndromes had an 11% decrease in the odds of attending follow-up visits with each 1-year increase in age compared to a 4% decrease in children without syndromes. Conclusions The only significant factors determining patient attendance were the presence of a syndrome and increasing age.