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Objective: Aim of this study is to measure the quality of life among children and adolescents with congenital or acquired heart disease and to evaluate the perception differences between the patients and their parents in Turkey.
Method: Fifty-nine patients between the ages of 8-20 from Dr. Behcet Uz Children’s Hospital Pediatric Cardiology Service were enrolled in our study. Inclusion criteria were being both mentally and educationally capable of answering the questionnaire and having diagnosed congenital or acquired heart disease at least one month ago. Validated and reliable “Pediatric Quality of Life Inventory” (PQOLI) which consists of three scales (sociodemographic data form, psychosocial, total point) was used. PQOLI is a self-assessment measure and achieving greater scores is correlated with better life quality. All data were analyzed on SPSS 15.0 statistical program.
Results: The study group consisted of 57.6% boys and 42.4% girls. Mean age was found to be 12.58±32.05 years. 33 of the participants were between 8 to 12 and 26 between 13 to 20 years old. PQOLI and subscales of all the patients were compared in terms of gender and age; however, no statistically significant difference has been found (p>0.05). 11.9 % of the study group had a cyanotic heart disease and the others were acyanotic. Comparing the cyanotic and acyanotic group with PQOLI revealed statistically significant differences only in the parental psychosocial health (p=0.009) and total score (p=0.005). 47.5% of the patients were cardiac catheterized. Regarding cardiac catheterization, except PQOLI of parental physical score all of the other parental and patient scores were found to be significantly lower (p<0.05). 42% of the patients had undergone open heart surgery and PQOLI of these children revealed significantly lower physical scores (p=0.017) and also total PQOLI scores of parents and patients were statistically significantly lower (p=0.048). Patients who were under continuous drug therapy had statistically significant lower PQOLI scores at all subgroups of both parents and patients (p<0.05) except physical health scores. Hospitalization had an effect on PQOLI. Patients without hospitalization, hospital admission 3 or less and 4 or more were compared and only the child life quality physical score was found to be statistically significant low (p<0.05).
Conclusion: In our study, despite of global expectation, neither having cyanotic disease nor elder age revealed a decrease in life quality. Parents of cyanotic patients had decreased perception of PQOLI whereas the patients did not. Catheterization did not make a difference in parental physical health perception; thus we thought that patients had developed hope to be cured with catheterization. Continuous drug therapy administration and the number of hospitalizations both had statistically important negative effects on life quality; however, previous studies had never mentioned these effects. This study revealed that there were many discrepancies between patients and parents in many fields of life quality. Nowadays life quality gains importance globally, and our study is the first and pioneering one in Turkey which evaluates children and adolescents with congenital or acquired heart disease.