The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia

OBJECTIVES To assess the impact of congenital heart diseases (CHDs) on bio-psychosocial aspects of the quality of life (QOL) of patients and their families. METHODS A cross-sectional study was carried out between May 2014 and August 2015, including children aged less than 16 years, and followed-up at King Abdulaziz University Hospital, Jeddah, Kingdom of Saudi Arabia for CHD. A broad questionnaire was administered to investigate biological, psychological, and social dimensions of afflicted children, their parents, and siblings. Outcomes were computed as impact scores (0-100%) for each dimension and family member. RESULTS A total of 180 children (104 [57.8%] males; mean age ± standard deviation [SD] = 5.65 ± 4.8 years) were included. There were 25% children complaining of recurrent respiratory infections, 35% of frequent hospitalizations, 38.9% had milestone delay, and 12 (6.7%) only had a social security registration. Mothers declared difficulty coping with their children's disease in 20% of cases and 22.2% reported being depressed. Mean ± SD impact scores in afflicted children were: 26.1 ± 26.2 (biological), 28.7 ± 28.8 (psychological), and (20.2 ± 25.7) social dimensions. Mothers' impact scores were higher than fathers'. Complex CHDs had an additional impact, and children from families with less knowledge on CHD had relatively greater impact scores. CONCLUSION Congenital heart diseases impact all aspects of QOL of patients and their families, and are associated with high comorbidity. Social and psychological support and education for patients and their parents are crucial factors for improving QOL.