الفهرس 
ThalassemiaOnly 14 pages are availabe for public view
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Abstract
Background: The assessment of quality of life in patients, especially in those with chronic illness such as thalassemia, is important as the medical assessment in that it focuses on the individuals’ own views of their well-being and other aspects of life. The aim of the present study was to: assess the quality of life of patients with thalassemia who attend Ain Shams hematology clinic. Patients and Methods: A case control study was conducted on 127 thalassemic patient whom age ranged from (6-21years) and 65 healthy ones. The Pediatric Quality of Life Inventory TM Version 4.0 was used and other related clinical characteristics of the patients were collected via medical record review and repeated one year later. Results: The present study revealed that the quality of life (QOL) of patients with Thalassemia Major was affected. The total QOL score of cases at the study entry was 63.74±13.2 and at the end was 72.62±11.8 while control was 80.7±3.17 and 81.0± 4.1. The physical score was the mostly affected58.46±18.09, followed by school, emotional and social score (72.32±18.56, 74.6±12.33, 76.8±13.78) respectively. As regards the compliance; the good compliant had better QOL score 75.57±9.41 while it was 69.11±13.39 for poor compliant (p value =0.003). The quality of life was better in patients who used oral iron chelators as defrasirox 76.4±8.38, deferipron 74.8±11.13, combined chelation 69.34±14.29 and desferrioxamine 67.44±10.96 (p value0.005). The total QOL score of patient followed up by one doctor was 77.86± 6.5 and those followed up by multiple doctors was 70.12± 12.91.There was significant correlation between pre-tansfusional hemoglobin and QOL score (p value 0.005) and significant correlation between serum ferritin and QOL score (p value <0.001).The predictors of good QOL score ≥70%were HB ≥7.5, serum ferritin ≤1500and oral chelators. Conclusions: Thalassemia has a negative impact on perceived physical, emotional, social and school functioning. The QOL can be improved with regular blood transfusion and compliance to iron chelation therapy. Adherence to the treatment regimen provided increase psychosocial support and follow up of patients with a single doctor could improve their quality of life.