Knowledge, Attitude, and Practice of Sickle Cell Disease Among Sickle Cell Disease Patients in Sudurpashchim Province of Nepal: A Cross-Sectional Study.

Background: Sickle cell disease (SCD) is a genetic hemoglobinopathy which is responsible for about 3.5% of deaths in < 5 years age of children. It is a global health issue particularly affecting the native tribe or backwards community like Tharu ethnic group of Nepal. The primary aim of this study was to assess the knowledge, attitudes, and practices of SCD patients in the Tharu communities of Sudurpashchim Province, Nepal. Methods: This is the cross-sectional study conducted in Tharu ethnic group residing in Kailali and Kanchanpur districts of Nepal. Results: The majority of the respondents were female (56.43%) of the age group 19-29 years (48.57%). Out of total patients, 77.10% were aware of the SCD. Health workers (75.00%) were the major information provider. However, less than half respondents (47.14%) had knowledge of the signs and symptoms of the SCD. Awareness of SCD and individual attitudes are significantly associated with a greater likelihood of seeking preventive measures (p < 0.05). In contrast, no significant associations were found between marital status and preventive measures or between education level and knowledge of SCD (p > 0.05). Although patients showed good knowledge behavioral practice was average. Conclusion: This study highlights the need for targeted awareness and preventive efforts to reduce SCD in Tharu communities of Sudurpashchim Province, Nepal, emphasizing the influence of marital status and the importance of tailored health education and increased genetic counseling for vulnerable groups. Therefore awareness campaign to change the behavioral attitude along with nationwide surveillance to know the true picture about prevalence of SCD among Tharu communities in Nepal is necessary.