Akademik Veri Yönetim Sistemi
Turk Pediatri Arsivi, cilt.46, sa.3, ss.220-227, 2011 (SCI-Expanded, Scopus, TRDizin)
Aim: To assess together with their parents, the quality-of-life of the teenage patients who had undergone open heart surgery because of cyanotic heart disease during their infancy and to compare their self-perception to that of physically healthy control group. Material and Method: This study includes 53 patients who had undergone operation for cyanotic congenital heart disease in Istanbul University, Institute of Cardiology, between 1989-1994. The relatives and the patients were informed with a consent form approved by Istanbul University, Cerrahpaşa Medical Faculty, Clinical Studies, Ethics Commitee (Decree no. D-005, Date: 11-10-2009). Group 1 was the healthy control group (15 patients, median age: 19 years, 8 months), Group 2 included patients with single ventricle who had undergone Fontan procedure (20 patients, median age: 19 years, 6 months; 10 of them had tricuspid atresia, five of them had pulmonary atresia with intact ventricular septum, three of them had double inlet left ventricle, one of them had double outlet right ventricle, one of them had ventricular septal defect and pulmonary atresia), group 3 included patients who had undergone operation for congenital cyanotic heart disease (33 patients, median age: 19 years, 2 months; 18 of them had transposition of the great arteries, 10 of them had tetralogy of Fallot, two of them had complete atrioventricular canal defect and pulmonary stenosis, two of them had double outlet right ventricle, one of them had pentalogy of Fallot). In this study, the quality of life and self perception scales were used. Quality of life scale was filled by patients, healthy adolescents and their parents separately. Self perception scale was only filled by patients and healthy adolescents. The comparison of age and self perception scores between the groups was carried out with unidirectional Analysis of variance (ANOVA) and the multicomparisons with LSD (Least Significant Difference). Since the quality of life variable does not have a normal distribution, the comparions were carried out with Kruskal-Wallis nonparametric ANOVA test and the multicomparisons with Dunn's test. Results: There was not a significant difference between the groups in terms of age and sex. In the quality of life scale (QOLS), for the replies to related questions, a significant difference was determined between the groups. The replies of group 2 and 3 for about quality of life of both children and the parents were far more negative when compared to those of the control group. When the groups were compared via multiple comparison tests, there was no significant difference between group 2 and 3. The replies of the parents regarding their children's quality of life, were statistically more negative than those of their children (p<0.001). Within the self perception scale, between group 1 and 3, there were significant differences about the social acceptance, behaviours in relationships and general self perception (p=0.03, p=0.03 and p=0.01; respectively). The most significant difference that was detected between group 1 and 2, was about the behaviour in relationships (p=0.04). Conclusions: With the help of developing technology, and surgical experience, many complex cyanotic heart diseases are treated successfully and most patients reach puberty. However the responses for quality of life and self perception paremeters of this group of patients are more negative than those of the control group. Therefore, these adolescents and especially their parents may need psychosocial support.