Health related quality of life and family functioning of parents having children suffering from thalassaemia

Background: Thalassaemia is a hereditary blood disorder without an effective cure in majority. Despite recent advances in the management of thalassaemia, people living in developing countries do not receive satisfactory treatment. Parents of these children have many problems in various aspects of physical, emotional, social and communications. The objective of this study was to assess the HRQOL and family functioning of parents having children with thalassaemia in comparison to the parents of healthy children. Methods: This case-control study was conducted in the Department of Paediatrics, Sylhet MAG Osmani Medical College Hospital during the period of January 2022 to June 2022. Data were collected by using standard self-administered multi-dimensional questionnaire of the paediatric quality of life inventory (PedsQLTM) 4.0 FIM 2.0 Bengali version. A total of 50 parents of children with thalassaemia were enrolled as cases. Another 50 age and sex matched parents of healthy children were selected as controls. In both studied groups parents were free from any chronic diseases. Descriptive and analytical statistics were performed to compare scores between the two groups (case and controls). Results: Baseline characteristics of cases and controls regarding age, sex, educational status and socio-economic conditions were comparable. PHRQOL summary scores in cases and controls were 56.67±16.34 and 85.53±14.24 respectively. The FaF summary scores were 68.46±15.87 and 78.64±11.79 respectively. It has been observed that both summary scale scores were significantly lower (p<0.01) in case group. Conclusion: HRQOL and family functioning of parents having children with thalassaemia were significantly lower than the parents of healthy children.