[Quality of life research in patients with cleft lip and palate: preliminary results].

While esthetic and functional outcomes of treatment have improved for patients with cleft lip and palate (CLP), a CLP remains a severe problem for patients and relatives. To date, psychological research has dealt with issues such as intelligence, self-consciousness or treatment satisfaction but the long-term impact of a CLP on a psychological construct such as quality of life has yet to be explored. From a pool of 156 patients with CLP, subgroups of varying sizes were examined with a set of standardized questionnaires (KINDL, SF-36, Social Support Survey). In all patients, primary operative treatment had been accomplished. Long-term impact of the CLP on family life was assessed by 112 of the patients' parents by filling in the Impact on Family Scale. A set of questionnaires, especially developed for patients with CLP, was administered as well. For all patients who have been being treated in an interdisciplinary cleft center for their entire life, the results presented indicate that quality of life is good and within a normal range. Social support appears to be within a normal range. Parents report only minor long-term impact of the CLP on family life and family planning. Treatment satisfaction is high in the CLP patients. The questionnaires especially aimed at CLP patients indicate more specific problems mainly concerning social acceptance, where patients think the CLP had a negative impact. The standardized questionnaires employed so far failed to capture these problems. The combination of the two types of questionnaires is a sufficiently sensitive assessment procedure.