罕见病公众认知现状分析：基于杭州市滨江区调研数据

Analysis of the Current State of Public Awareness of Rare Diseases: Based on Survey Data from Binjiang District, Hangzhou City

摘要: 目的：调查杭州滨江区群众罕见病认知现状及影响因素，为优化科普策略提供依据。方法：随机抽样开展问卷调查(含基本信息与10项认知测试题)，用SPSS 23.0统计分析，多元线性回归探析影响因素(P < 0.05为差异有统计学意义)。结果：回收有效问卷300份，样本呈年轻高知特征；认知整体偏低(均值约50%，40%正确率区间占比最高，80%以上高分段不足16%)；认知随年龄递减、学历递增，医疗卫生从业者认知显著更高；年龄(26~35岁影响最著)、学历(硕士及以上影响最著)、是否为医护职业是独立影响因素。结论：滨江区群众罕见病认知整体不足，存显著人口学差异；新媒体未消核心医学信息不对称；需开发标准化评估工具，开展科普干预纵向研究，推动个体认知转化为社会保障合力。

Abstract: Objective: To investigate the current status of public awareness of rare diseases and its influencing factors in Binjiang District, Hangzhou, and to provide a basis for optimizing public education strategies. Methods: A questionnaire survey (including basic information and 10 awareness test questions) was conducted using random sampling. Data were analyzed using SPSS 23.0, and multivariate linear regression was used to explore influencing factors (P < 0.05 was considered statistically significant). Results: A total of 300 valid questionnaires were collected. The sample was characterized by a young, highly educated demographic; overall awareness was low (mean approximately 50%, with the 40% correct response range having the highest proportion, and less than 16% scoring 80% or higher). Awareness decreased with age and increased with educational attainment; healthcare professionals demonstrated significantly higher awareness; Age (with the strongest effect observed in the 26~35 age group), educational attainment (with the strongest effect observed among those with a master’s degree or higher), and whether the respondent was a healthcare professional were identified as independent influencing factors. Conclusion: Overall awareness of rare diseases among the public in Binjiang District is insufficient, with significant demographic disparities; new media has not eliminated core medical information asymmetry; there is a need to develop standardized assessment tools, conduct longitudinal studies on science communication interventions, and promote the transformation of individual awareness into a collective effort for social security.