The Required Modifications and the Effectiveness of the Current Awareness Programs for Thalassaemia Disease Management and Prevalence Controlling in Sri Lanka

Abstract

Thalassaemia is a chronic, genetically inherited, autosomal recessive blood disease. Thalassaemia patients suffer serious illnesses with socio-economic problems and need treatments throughout their lifetime. The estimated number of Thalassaemia homozygote patients in Sri Lanka is 2000 and Beta Thalassaemia carriers count is 2.2% of the population. The objectives of this study are to identify the present knowledge and attitude of patients and their families about thalassaemia, identify the carrier’s awareness and interest in the screening test and evaluate the effectiveness of the awareness programs. This research was conducted in the National Thalassaemia Centre in Kurunegala and was a community-based cross-sectional study. Data collection tools were structured interviews, observation method and literature sources. Twenty-five percent from each study population of different ages of patients, fifty parents, and fifty carriers in was the study sample. Patients below 12 years think that they need a bone marrow transplantation unit and adult patients believe correct blood transfusions and iron chelation can manage the disease positively. This knowledge was mostly given by the hospital and the contribution of mass media is slight. Carriers have a relatively better awareness of their condition. But their relatives are impassive about screening tests because they have fear and shame about the disease and carrier condition. People think that there is no change, positive or otherwise in the population with awareness programs. The major reason is because awareness does not reach the correct persons effectively. A detailed clinical and social knowledge of the disease should be included in the mass media communications and school syllabus.