Psychological outcomes amongst cleft patients and their families

Our aims were to determine the psychological status of a sample of cleft lip and palate patients and their parents using standardised interviews and to assess subjects' satisfaction with cleft treatment. In all, 242 interviews of 112 patients and 130 parents were carried out in nine base hospitals used for deft treatment. 73% (n = 38) of 15- and 20-year-old subjects felt their self-confidence had been very much affected as a result of their cleft. 60% of all 112 interviewed patients were teased about speech or deft related features. A significant minority of 15-year-old subjects (23%, n = 7) felt excluded from treatment planning decisions. Despite high levels of overall satisfaction with cleft care, 60% (n = 78) of parents and 37% (n = 41) of interviewed patients made suggestions for improvements. No agreement between parent/child pairs for their satisfaction with clinical outcome of cleft related features was found using the weighted kappa statistic to determine the level of agreement. Differences between parents' and their child's satisfaction ratings for cleft related features were not statistically significant except for the ratings for 'lip' (P<0.005) and 'teeth' (P<0.05) for 15-year-old subjects (Wilcoxon signed rank sum test). Patients' views on planned treatment should therefore be independently sought from their parents' views, as no agreement was found within the groups for perceived satisfaction with clinical outcome. This study demonstrates the importance of identifying 'psychological outcome' as well as 'clinical outcome' in order to improve rehabilitation for cleft lip and palate patients. Seven families were referred for counselling for cleft-associated emotional problems as a result of this survey.