Abstract
Introduction: β-thalassemia is an autosomal recessive single gene disorder characterized by defective production of hemoglobin and excessive destruction of Red Blood Cells. The defect causes an abnormal development of Red Blood Cells and ultimately anemia. The cultural and religious scenario in Muslims, Khatris and Punjabis migrated from Pakistan is such that consanguineous marriages are quite common. There is no concept of premarital screening of counseling of individuals with a family history of disease. The only way to prevent the disease and to reduce the morbidity and mortality is by educating the general population. For this reason, present study was taken to evaluate the knowledge, attitude and practices of parents of Thalassemic children. Objectives: To assess the Knowledge, Attitude and Practices of Parents of Thalassemic Children. Methods: The study was conducted on parents of 100 patients of thalassemia who are coming regularly for blood transfusion in Thalassemia Day Care Centre (TDCC) run by Patiala Thalassemic Children Welfare Association (PTCWA) at Rajindra Hospital, Patiala to collect the relevant data for the study to evaluate the Knowledge, Attitude and Practices (KAP) of parents of thalassemic children. Results: Mean age of the patients was 8.36 years. 66% patients were males and 34% were females. 41% of the patients were from Khatri community and 59% were from other communities. Family history of thalassemia was present in 23% of the cases and history of consanguineous marriage was present in 4% of the cases. Seventy six percent of the parents knew about the prenatal diagnosis that could be performed to prevent the birth of thalassemic children. Knowledge regarding the treatment options available was found more in parents from Bania, Khatri and Kamboj communities. More positive attitude of parents towards prevention of thalassemia was found in parents who have answered 11-15 questions from Knowledge questionnaire. Conclusion: There should be a community based educational efforts to increase awareness of this problem especially to the people from low socioeconomic class and from rural area. Control of thalassemia requires treatment of the individual patients as well as a community based educational effort to increase the awareness of this problem.
Highlights
Β-thalassemia is an autosomal recessive single gene disorder characterized by defective production of hemoglobin and excessive destruction of Red Blood Cells
Seventy six percent of the parents knew about the prenatal diagnosis that could be performed to prevent the birth of thalassemic children
The key findings of the study as below: Table 5 shows that 41% of the parents knew that thalassemia is a blood disorder, 84% knew that it’s a genetic disorder, 26% of the parents knew that
Summary
Β-thalassemia is an autosomal recessive single gene disorder characterized by defective production of hemoglobin and excessive destruction of Red Blood Cells. Hemoglobin is formed of four protein subunits, normally two α and two β. Genetic mutation in the gene encoding for β subunits of proteins, results in reduced or totally absent synthesis of β globin chain leading to the formation of abnormal hemoglobin or even to the absence of β hemoglobin. The defect causes an Abnormal development of Red Blood Cells and anemia [1]. Mainstay of therapy of thalassemia major is transfusion therapy and management of its complications. Hyper transfusion remains the most accepted regimen in most parts of the world in which the hemoglobin level above a minimum of 10 g% is maintained [2]
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