PSYCHOLOGICAL OUTCOMES AMONGST CLEFT PATIENTS AND THEIR FAMILIES

Our aims were to determine the psychological status of a sample of cle ft lip and palate patients and their parents using standardised interv iews and to assess subjects' satisfaction with cleft treatment. In all , 242 interviews of 112 patients and 130 parents were carried out in n ine base hospitals used for deft treatment. 73% (n = 38) of 15- and 20 -year-old subjects felt their self-confidence had been very much affec ted as a result of their cleft. 60% of all 112 interviewed patients we re teased about speech or deft related features. A significant minorit y of 15-year-old subjects (23%, n = 7) felt excluded from treatment pl anning decisions. Despite high levels of overall satisfaction with cle ft care, 60% (n = 78) of parents and 37% (n = 41) of interviewed patie nts made suggestions for improvements. No agreement between parent/chi ld pairs for their satisfaction with clinical outcome of cleft related features was found using the weighted kappa statistic to determine th e level of agreement. Differences between parents' and their child's s atisfaction 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). Patien ts' views on planned treatment should therefore be independently sough t from their parents' views, as no agreement was found within the grou ps for perceived satisfaction with clinical outcome. This study demons trates the importance of identifying 'psychological outcome' as well a s '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.