Life expectancy has increased in congenital heart diseases (CHD) patients and the interest has risen considering the quality of life (QOL). The study aimed to compare patients and proxy-parents reports on CHD children' QOL.
Materials and Methods
This cross-sectional study performed on 165 CHD patients aged 2-18 years during 2016 using Pediatric Quality of Life 3.0 (PedsQL™ 3.0) inventory. PedsQL™ 3.0 has same dimensions with different question for various age groups. The internal consistency of the inventory scales and subscales was assessed by means of Cronbach’s alpha. Scales with reliability ≥ 0.70 were recommended.
The overall mean score of QOL was significantly higher in parents’ perceived (51.78±10.87) compared to children’s perceived (48.61±11.25) (t= -2.615, P=0.009). The anxiety was significantly higher (56.23 ±17.93 vs. 47.31± 17.96) in parents’ perceived compared to children (t= -2.281, P=0.025). The cognition has been perceived significantly better by children than parents’ (51.22±15.76 vs. 41.53± 13.15). Children with simple diseases had higher score of quality of life (53.09±13.44) compared with those children with complex diseases (42.73±18.23) (t=2.786, P=0.007) for 2-4 years age in parents' perceived. The mean scores in heart problem scale were 46.74±13.64 and 61.14±18.17 and for the communication scale were 28.49±13.87 and 41.77±20.23 for pre and post operated children respectively for the age group of 5-7 years in parents' perceived.
Resulted no impacts by two clinical (types of diseases and operation) factors on CHD patients' Health-related quality of life (HRQOL). Therefore should be considered more clinical factors to detect the gap in QOL in CHDs.