Cleft lip and palate care in the United Kingdom - The clinical Standards Advisory Group (CSAG) study. Part 2: Dentofacial outcomes and patient satisfaction

Objective: To describe facial development and appearance, quality of bone grafts, oral health, and patient/parent satisfaction, with clinical outcome, for children in two age cohorts born with unilateral cleft lip and palate (UCLP) throughout the United Kingdom. Design: Cross-sectional outcome study. Setting: Fifty National Health Service cleft centers. Participants: Children born with complete UCLP between April 1, 1982, and March 31, 1984, (12-year-olds) and April 1, 1989, and March 31, 1991 (5-year-olds). Data were collected for 239 5-year-olds and 218 12-year-olds. The parents of these children were also interviewed to determine levels of satisfaction with care received. Main Outcome Measures: Skeletal pattern, dental arch relationship, success of alveolar bone grafting, facial appearance, oral health status, and patient/ parent satisfaction. Results: Nearly 40% of 5- and 12-year-olds had poor dental arch relations, and 70% of 12-year-olds had midface retrusion. Fifteen percent of 12-year-olds had not received an alveolar bone graft, and only 58% of bone grafts that had been undertaken were successful. Twenty percent of 12-year-olds and 40% of 5-year-olds had untreated dental caries. Less than one-third of subjects had a good facial appearance as judged by a panel of experts. Levels of patient and parent satisfaction were generally high. Conclusion: A rigorous evaluation of cleft care in the United Kingdom reveals disappointing outcomes.