General disease awareness among parents of thalassemic children visiting government versus private care centers of Rawalpindi and Islamabad

Abstract

Introduction: Thalassemia Major is a hemolytic anemia which is prevalent in developing countries and is preventable by promoting awareness among the masses. Objectives: To assess the current general disease awareness and compare the level of understanding between parents attending government versus private thalassemia care facilities. Methods: This cross-sectional study was conducted in four thalassemia centers of Rawalpindi and Islamabad from December 2017 to January 2019. Parents/caregivers of Thalassemia Major Patients were included by non-probability purposive sampling and those having children having other blood disorders, were excluded. After taking informed consent, a pretested structured questionnaire was given to participants and awareness level was classified into ‘unaware’, ‘aware’ and ‘well-aware’ categories, based on the score achieved. Data was evaluated using SPSS version 23.0. Chi-square test was used for analysis. Results: A total of 277 parents were included. Parents who took their children to government and private centers were 161 (58.1%) vs 116 (41.9%) respectively. There was a statistically significant difference in the know-how about mode of disease transmission (p value=0.02), blood-borne diseases (p value=0.00), method of complete cure (p value= 0.05) and harmful effects of repetitive blood transfusions (p value=0.05) among parents visiting the two different facilities. While 80.2% parents in private centers were ‘well-aware’, the corresponding percentage in government centers was 57.1%. Conclusion: General disease awareness was average. Parents visiting private institutes have shown much better awareness. Funding and dedicated education, with focus on government organizations, which are accessible for the common man, is required.