The Eurocleft study: Intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 1: Introduction and treatment experience

Objective: To calculate the amount of treatment and associated travel experienced by five groups of patients treated at different centers. (This data is related to outcomes and patient/parent satisfaction in subsequent papers in this series). Design: A longitudinal cohort study where results were previously reported at 9 years and follow-up measurements were obtained for 12 and 17 years. Setting: Multidisciplinary cleft services in Northern Europe. Subjects: 127 consecutively treated individuals with repaired unilateral complete cleft lip and palate. Main Outcome Measures: Numbers of surgeries and outpatient visits, number of visits, and treatment duration for early orthopedics and orthodontic treatment, associated travel time and difficulties. Results: The mean number of operations per center ranged from 3.5 to 6; length of orthodontic treatment from 3.3 to 8.5 years, and attendance from 49 to 94 visits; and for early orthopedics, 0 to 15 months of treatment, 0 to 17 visits, and 0 to 146 days in hospital. Conclusion: Protocols for the management of complete unilateral cleft lip and palate can vary dramatically in the burden of treatment imposed.