Children and Adolescent Health Research Center, Zahedan University of Medical Sciences, Zahedan, Iran.
Pregnancy Health Research Center, School of Nursing and Midwifery, Zahedan University of Medical Sciences, Zahedan, Iran.
School of Nursing and Midwifery, Zahedan University of Medical Sciences, Zahedan, Iran.
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.