Health related quality of life in Middle Eastern children with beta-thalassemia

We studied 60 thalassemia children from Middle Eastern countries with a median age of 10？years (range 5 to 17？years). HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) 4.0. The Questionnaire was completed at baseline by all patients and their parents. The agreement between child-self and parent-proxy HRQoL reports and the relationship between HRQoL profiles and socio-demographic and clinical factors were investigated.The scores of parents were generally lower than those of their children for Emotional Functioning (mean 75 vs 85; p？=？0.002), Psychosocial Health Summary (mean 70.3 vs 79.1; p？=？0.015) and the Total Summary Score (mean 74.3 vs 77.7 p？=？0.047). HRQoL was not associated with ferritin levels, hepatomegaly or frequency of transfusions or iron chelation therapy. Multivariate analysis showed that a delayed start of iron chelation had a negative impact on total PedsQL scores of both children (p？=？0.046) and their parents (p？=？0.007).The PedsQL 4.0 is a useful tool for the measurement of HRQoL in pediatric thalassemia patients. This study shows that delayed start of iron chelation has a negative impact on children’s HRQoL.