Purpose To assess the health-related quality of life (HRQoL) of Jordanian children with thalassaemia, identify differences in HRQoL according to socio-demographic and clinical characteristics of participants, and identify factors influencing HRQoL of thalassaemic children in Jordan.
Methods The Pediatric Quality of Life Inventory and socio-demographic and clinical data forms were used to collect data from a convenience sample of 128 thalassaemic children and 83 healthy children between the ages of 8 to 18 years. Thalassaemic children were recruited from two thalassaemia units during their blood transfusion and treatment visits. Healthy children were recruited from four public schools.
Results Thalassaemic children had significantly lower HRQoL mean scores in all dimensions compared with their healthy counterparts. The lowest mean scores for thalassaemic children were reported for the school functioning and the physical functioning domains (46.71 ± 21.14 and 54.19 ± 15.10), respectively. Regression analysis showed that disease complications and family history of thalassaemia explained 8.5% of the variance in the total HRQoL.
Conclusion This study highlights the negative impact of thalassaemia on the quality of life of children, especially in terms of physical well-being and school achievement. Healthcare providers, counsellors and school teachers have very important roles in helping these children to overcome these problems and enhance their quality of life.