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El Demerdash, D.1; Osama, E.1; rashad, M.2; El Kholy, M.1; Mattar, M.1

doi: 10.1097/01.HS9.0000568100.77527.12
Publication Only: Thalassemias

1internal medicine-clinical hematology unit

2community Medicine, cairo university, Faculty of Medicine, Giza, Egypt

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Thalassemia is the commonest type of chronic hemolytic anemia in Egypt. Despite recent advances in the management of thalassemia, people do not receive satisfactory treatment. For such chronic conditions, not only is patients' survival important but their quality of life (QOL) is also important, which is primarily driven by psychological and social constraints.

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This study explores various factors that affect QOL in transfusion-dependent adult thalassemia patients hence the authorities who provide services to patients, be aware of related mental and social consequences in addition to the burden of the disease to prepare a better living environment for those patients.

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We investigated 85 Egyptian adults with transfusion Dependent thalassemia, quality of life (QOL) was assessed using the following questionnaires: short form 36-item questionnaire (SF-36), EuroQol Study (EQ-5D-3L) questionnaire, visual analogue scale (VAS) questionnaire along with through complete history taking and physical examination with special emphasis on socio-demographic characters, management details including frequency of transfusion, iron chelation therapy and adequacy, Hepatitis status and does patient had splenectomy or not. This study was conducted at clinical hematology outpatient clinic of internal medicine department, Kasr Alainy school of medicine.

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we recruited 85 TD adult thalassemia patients (Female were 54%) with median age of 24 years (IQR 20-28), 20% of them had HCV infection, 90.6% were compliant on iron chelating therapy; 23.4% were on deferoxamine (DFO), 35.1% were on deferasirox (DFX) and 41.6% were on deferiprone (DFP). SF-36 shows intermediate median score of 52.8 (IQR 43.4-61.7), better scores in males than females were observed (P value .037), all aspects of QOL were impaired in our studied patients not only physical problems but also emotional problems with significance decrease in their energy level (IQR 30-45) and general health (IQR 37.5-54.1). It was affected by serum ferritin level with lower physical functions with higher serum ferritin level (P value 0.043) was observed. EQ-5D-3L questionnaire assessment showed markedly affected mental health domains (anxiety and depression mainly) more than physical health domains, it was observed that type of iron chelators affect healthy utility subscales as mobility domain which was better in patients receiving deferiprone in comparison to other chelators, mobility domain was affected by the age with better scores in older patients (P value 0.002), also VAS questionnaire showed intermediate median score of 50 (IQR 40-60) among our studied patients and was affected by patients hemoglobin level (P value 0.039) and serum ferritin (P value 0.005)

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QOL in our studied TD thalassemia patients was markedly compromised and was affected by gender, age, anemia severity, serum ferritin as well as iron chelator therapies, QOL of assessment should implemented in thalassemia patients care and regularly evaluated, finally our patients and their families require all health utility supports.

Copyright © 2019 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the European Hematology Association.