Quality of life among parents of children with heart disease

Background: Quality of life of parents of chronically ill children has become increasingly important as the mortality rates associated with such illnesses have decreased and survival rates have increased. Aim: To describe the Health related quality of life (HRQOL) of parents whose children are suffering from heart diseases and to identify the most important factors that could affect it. Methods: A cross sectional study was conducted in Alexandria, Egypt in the two main hospitals that treat children with heart diseases. 400 parents of children with heart diseases were recruited and a comparison group (400) of parents of children with minor illnesses were included from both hospitals. Socioeconomic and disease related data were collected, SF36 was used to collect data regarding the QOL. MANOVA was used to compare the SF-36 scores between groups and to explore the impact of different variables. Results: In all SF-36 subscales, parents of children with heart diseases reported significantly poorer HRQOL, except for pain subscale. The most striking differences were for General Health, Vitality and role limitation physical. Factors that had a significant impact of HRQOL were severity of illness, type of heart disease in addition to age of child, having multiple children, financial situation and presence of comorbid condition. The mean scores for different domains were the lowest for younger age, rheumatic heart disease and female children. Conclusion: QOL of parents of children with heart diseases was significantly impaired and it was influenced by several factors; mainly related to the clinical status of the child. Psychological status, social support and reassurance of the parents should be considered when making treatment decision for their children.