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Objective: Aim of this study is to measure the quality of life among children aged 2 to 7 years with congenital or acquired heart disease and to evaluate the perception differences between the patients and their parents in Turkey.
Methods: Sixty-three patients aged 2 to 7 from Dr. Behcet Uz Children’s Hospital Pediatric Cardiology Service were enrolled in our study. Inclusion criteria was being both mentally and educationally capable of answering the questionnaire for the parents and having diagnosed congenital or acquired heart disease at least one month ago. Validated and reliable “Pediatric Quality of Life Inventory” (PQOLI) consisting 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 58.7% girls and 41.3% boys. PQOLI and subscales of all the patients were compared in terms of gender; however, no statistically significant difference has been found (p>0.05). 17.5% of the study group had a cyanotic heart disease and the acyanotic were 82.5%.Comparing the cyanotic and acyanotic group with PQOLI revealed statistically significant differences only in the parental psychosocial health (p=0.011) and the total score (p=0,031). 60.3% of the patients were cardiac catheterized. Regarding cardiac catheterization, all parental and patient PQOLI scores were found to be significantly lower (p<0.05). 36.5% of the patients had undergone open heart surgery and PQOLI of these children revealed significantly lower scores at all subscales (p=0.05). Patients who were under continuous drug therapy had statistically significant lower PQOLI scores at all subgroups of both parents and patients (p<0.05). Hospitalization also affected PQOLI. Patients without hospitalization, hospital admission 3 or less and 4 or more were compared and all PQOLI subscales were found to be statistically significantly low in the more frequently hospitalized group (p<0.05).
Conclusion: As far as we know, this is the first study which enrolled children aged 2 to 7 years in the field of pediatric cardiology. In the cyanotic group there is no decrease found in children’s perception of life quality whereas their parents have low scores at PQOLI. In early childhood, parental bonding and a symbiotic relation between mother and child develop, which made the parents more anxious. Also, the questionnaire was naturally not applied to the children who were 2 to 4 years old; instead it was applied only to the parents of children between 2 and 4. In contrast with many studies from outside of our country, cyanotic heart disease did not evoke a lower perception of PQOLI, whereas cardiac catheterization, open heart surgery, continuous drug administration and the number of hospitalization were issues that caused a decrease in parental PQOLI perception. We believe that this preliminary study will create a vision to serve pediatric cardiac patients in our country and will make some contribution to the literature.