Health related quality of life in Thalassemia patients treated by iron chelation therapy in the United arab Emirates

Abstract

β-thalassemia constitutes a major public health problem in the UAE and shows one of the highest carrier frequencies of β-thalassemia in the Gulf region. In spite of the advances in thalassemia treatment and increased survival rates, patients still suffer disease complications and significant burden from chronic treatment with transfusions and chelation. Furthermore, it is rather harder for them to face life challenges. Hence, the preservation of good quality of life is one of the major targets in clinical management of thalassemia patients which was assessed and highlighted in different studies. It is believed that these assessments provide complementary clinical information to help the hematologists in the holistic evaluation of the patient's health status. Methods: A cross-sectional study was conducted among children and adolescents with thalassemia who received treatment in Saqr Hospital in UAE. Quality of life assessment was performed using the Quality of Life SF-36 questionnaire. The other instrument was a clinical record form including the demographics of the patients and clinical information about the disease history and lab findings pertaining to blood transfusion, blood indexes and medications. All patients signed a consent form prior to participating in the study. The results were compared to similar study done in the same center three years earlier. Results: Out of 25 patients recruited, more patients expressed better health than one year ago in our study (56%) than the previous study (36%). Physical Functioning was nearly the same in both studies while Role-Physical, Body Pain and General Health, Vitality, Social functioning, Role-emotional, Mental Health, and mental composite summary were higher in the current study. The average serum ferritin of the patients was 1473.358 ng/mL. Conclusion: Quality of life in thalassemic patients in our study done in 2014 showed improvement when compared to the results obtained in the same center three years ago. The domains mostly affected were the role-physical and role-emotional. This improvement in the quality of the patient life can be explained by changing parenteral to oral iron chelation therapy and the continuous health education programs. Quality of life assessment studies are warranted to increase the understanding of the thalassemia impact on the patients and to provide the necessary patient and family support.