Department of Anthropology, Central University of Odisha, Koraput, 763004, India.
Department of Anthropology, University of Delhi, Delhi, 110007, India.
J Natl Med Assoc. 2024 Oct;116(5):611-625. doi: 10.1016/j.jnma.2024.10.003. Epub 2024 Oct 17.
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.
尽管奥里萨邦镰状细胞血红蛋白（HbS）的患病率很高，但受影响社区对镰状细胞特征（SCT）和镰状细胞病（SCD）的认识和理解仍然很低。本横断面研究评估了 182 名镰状细胞携带者和 200 名年龄、性别和社区匹配对照者对镰状细胞血红蛋白病的知识、态度和实践（KAP）。镰状细胞血红蛋白病的总体知识在病例组和对照组中都非常低（得分为 2.8/10）。尽管大多数受访者听说过 SCD（85.71%对 82%），但很少有人知道 SCT（34.07%对 27%）。值得注意的是，没有参与者知道自己的血红蛋白基因型或携带者状态。只有极少数人知道症状、原因和预防措施。对照组的总体态度评分（4.75/11）略高于病例组（4.55/11），平均得分为 42.25%。虽然大多数人认识到需要定期治疗和筛查儿童（携带者 82.4%，对照者 90.5%），但许多人对婚前筛查的必要性犹豫不决。两组的总体实践评分都很低（0.4/5），但病例组的平均实践评分明显高于对照组（11.01%对 7.55%）。大多数参与者没有进行定期健康检查或采取预防措施（97.25%）。传统的医疗实践常用于治疗。参与者报告缺乏对 SCT 的认识以及对歧视、社会孤立和拒绝婚姻的恐惧，这些是筛查参与的主要障碍。
