The Eurocleft Study: Intercenter Study of Treatment Outcome in Patients with Complete Cleft Lip and Palate. Part 1: Introduction and Treatment Experience

Abstract

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.