β thalassemia major patients profile in Ninevah governorate-Iraq

Abstract

Background: In many developing countries the haemoglobinopathies form a major genetic problem and many thalassemia persons frequently suffer through all their life and may die unnecessarily from thalassemia, in addition to the lifelong treatment costs and the invasive interventions. The objectives of this study are to highlight the impact of thalassemia major and its management in Ninevah Governorate, to analyze the cost of caring for children with β-thalassemia major in Mosul and to dig for the socio-economic consequences of this preventable health problem.Methods: The data were obtained partly in a straight line to thalassemia center records. A cross-sectional survey of 292 β-thalassemic patient's through a direct face-to-face interview using specially designed simple open-ended questionnaire instrument. Results: The total number of β- thalassemia patients registered in our province is 1028 patients, 50 to 76 children born as β-thalassemia per annum and average 13 deaths /year.About 80% of them are children <15 years, relatively low socio-economic population status. 84.9% of the surveyed families had mis-knowledge or no knowledge about the disease causation, 90.4% of them did not expect the disease occurrence, in spite of 89.4% of them have heard about this disease. Marriage among relatives was prominent.Almost one third of studied thalassemic patient's families’ fall below line of poverty that is beside the terrible sociological and emotional possessions upon family. Each thalassemia patient cost the health institution $4320055 as a total average direct medical cost / annually. Conclusion: The majority of thalassemic patients are relatively of low socio-economic status. Most of the surveyed families were in need for authentic information about disease causation. Almost one third of thalassemic patients families in our province fall below the line of poverty. The average cost of management bypasses the cost of prevention by 196 times. All these necessitate the setting up of a supported optimum treatment, community education and routine premarital screening for thalassemia.