Cleft Lip and Palate Care in the United Kingdom—The Clinical Standards Advisory Group (CSAG) Study. Part 2: Dentofacial Outcomes and Patient Satisfaction

Abstract

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.