Knowledge, attitude and practices (kap) of the families of b- thalassemia patients in a thalassemia center of karachi

Introduction: Thalassemia is an inherited disorders of hemoglobin synthesis, from mild to severe in intensity, resulting from the partial or complete failure in synthesis of one or more globin chains. Pakistan is one of the states that has a high prevalence of beta thalassemia. It is predicted that about 9000 kids with beta thalassemia are born per year.This study is premeditated to understand the knowledge, attitude and practices of parents of beta thalassemia major children.
Methods: The cross-sectional KAP study was conducted from January 2018 to September 2018. Only 201 participants were included in the study who complete the given form. Additionally, the questionnaire was also translated in Urdu for the ease of parents. A pilot study was conducted to rule out any uncertainty.
Results : Our study comprise of 201 thalassemia patients, out of which 103(51.2%) were male and 98(48.8%) were female. Upon evaluating the knowledge half [109(54.2%)] of the parents had no earlier knowledge about thalassemia. A Significant variation was noted when about their perception of thalassemia (P=0.001). Another, noteworthy correlation were appreciated when parents were asked about the screening before marriage (P=0.001). When compared the attitude of parents towards intermarriages of thalassemia carriers the outcome was significant (P=0.006).
Discussion:The consequences of our study shows an enthralling dichotomy, a larger percentage (64.2%) were from rural areas as expected, 77.6% reported consanguineous marriages a major risk factor for the disease. In our country the lack of proper resources to facilitate patients of thalassemia making prevention programs the leading choice [9]. Moreover, 23.4 % of mothers had received PD, only 9.95 % opted for an abortion if the fetus was positive for Thalassemia. The one exemption to the rule was the fact that an appreciable 56.7 % disclosed having received genetic counseling.