The role of perceptions and knowledge of leprosy in the elimination of leprosy: A baseline study in Fatehpur district, northern India

Background
With the introduction of new interventions to prevent leprosy, such as post-exposure prophylaxis (PEP) given to contacts of leprosy patients, it is necessary to update our understanding of knowledge and perception of leprosy among the populations where these interventions will be introduced, in order to tailor communication optimally to the current situation. This study is a baseline study of the PEP++ project and aimed to assess the knowledge, attitudes and practices regarding leprosy in Fatehpur, India.
Methodology
The study used a community-based cross-sectional design with a mixed-methods approach. We assessed knowledge, attitudes, and practices with the KAP measure, and stigma with the Explanatory Model Interview Catalogue community stigma scale (EMIC-CSS) and the Social Distance Scale (SDS). In addition, semi-structured interviews and focus group discussions were conducted with all participant groups. The quantitative data were analysed using stepwise multivariate regression. The qualitative data were analysed using open, inductive coding and content analysis.
Findings
A total of 446 participants were included in the study: 100 persons affected by leprosy, 111 close contacts, 185 community members and 50 health care workers. In addition, 24 in-depth interviews were conducted and 35 people were included in focus group discussions. 12.5% of the participants had adequate knowledge of leprosy, while 22% had poor knowledge. Knowledge on cause (answered correctly by 10% of the participants), mode of transmission (5%) and symptoms of leprosy (16%) was especially poor. The mean EMIC-CSS score was 15.3 (95%CI 14.6–16.0) and mean SDS score 7.2 (95%CI 6.6–7.8). Better knowledge of leprosy was associated with lower levels of social distance towards persons affected by leprosy.
Conclusion
This study revealed poor knowledge regarding leprosy and high levels of stigma and fear and desire to keep social distance towards persons affected by leprosy. Community education that takes cultural beliefs, knowledge gaps and fears into consideration could improve knowledge, reduce misconceptions and positively influence the perception of leprosy.

研究背景
随着麻风病预防新干预手段的推出，例如为麻风病患者密切接触者提供的暴露后预防（post-exposure prophylaxis, PEP），我们有必要更新目标人群对麻风病的认知与态度，以便针对当前现状优化定制沟通策略。本研究作为PEP++项目的基线研究，旨在评估印度法特哈布尔（Fatehpur）地区人群对麻风病的知识、态度与行为情况。

研究方法
本研究采用基于社区的横断面研究设计，结合混合研究方法。通过知识-态度-行为（knowledge, attitudes and practices, KAP）问卷评估受试者的麻风病相关知识、态度与行为，并采用解释模型访谈目录社区污名量表（Explanatory Model Interview Catalogue Community Stigma Scale, EMIC-CSS）与社交距离量表（Social Distance Scale, SDS）评估污名化程度。此外，研究针对所有受试者群体开展了半结构化访谈与焦点小组讨论。定量数据采用逐步多元回归分析进行统计处理，定性数据则采用开放式归纳编码与内容分析法进行分析。

研究结果
本研究共纳入446名受试者：100名麻风病患者、111名密切接触者、185名社区居民及50名医疗卫生工作者。此外，研究完成24例深度访谈，并纳入35名受试者参与焦点小组讨论。结果显示，12.5%的受试者具备充分的麻风病相关知识，22%的受试者知识水平低下；其中，病因（受试者正确作答率为10%）、传播途径（5%）及麻风病症状（16%）相关知识的掌握情况尤为薄弱。EMIC-CSS量表平均得分为15.3（95%置信区间14.6~16.0），SDS量表平均得分为7.2（95%置信区间6.6~7.8）。麻风病知识掌握水平越高，与麻风病患者之间的社交距离意愿越低。

研究结论
本研究揭示当前人群对麻风病的知识掌握水平偏低，且对麻风病患者存在较高程度的污名化、恐惧心理与社交回避意愿。结合文化信仰、知识缺口与恐惧心理开展的社区教育，可有效提升人群麻风病知识水平、纠正错误认知，并积极改善对麻风病的认知态度。