Knowledge, attitudes, and practices of sickle cell hemoglobinopathies: A case-control study from the sickle cell belt of Odisha, India

Abstract

Despite the high prevalence of sickle cell haemoglobin (HbS) in Odisha, awareness and understanding of sickle cell trait (SCT) and sickle cell disease (SCD) remain low in affected communities. This cross-sectional study assesses the knowledge, attitude, and practice (KAP) regarding sickle cell hemoglobinopathies among 182 sickle cell carriers and 200 age-sex-community matched controls. The overall knowledge of sickle cell hemoglobinopathies was very low among both case and control groups (score 2.8/10). Although most respondents had heard about SCD (85.71% vs. 82%), few were aware of SCT (34.07% vs. 27%). Notably, none of the participants knew their haemoglobin genotype or carrier status. Only a very small proportion were aware of symptoms, causes, and preventive measures. The overall attitude score was marginally higher in the control group (4.75/11) than in the case group (4.55/11), with an average score of 42.25%. While most recognized the need for regular treatment and screening of children (82.4% carriers, 90.5% controls), many were undecided about the necessity of premarital screening. The overall practice score was very low in both groups (0.4/5), but the mean practice score was significantly higher in cases than controls (11.01% vs. 7.55%). Most participants did not undergo regular health check-ups or engage in preventive measures (97.25%). Traditional health practices were commonly relied upon for treatment. Participants reported a lack of awareness about SCT and fear of discrimination, social isolation, and marriage refusal as major barriers to screening participation.