目的：本研究藉由了解台灣民眾對罕見疾病議題的認知現況，探討其對罕見疾病相
關政策的瞭解程度、認知現況之影響因素，及知識、態度與行為間之相關性。
方法：針對台灣民眾以自編之結構式問卷進行線上調查，透過網際網路發送，共收
案 510 位 20-70 歲之台灣民眾，問卷有效回收率 93.1%。
結果：台灣民眾罕見疾病議題的知識量表總平均值為 49.12、態度量表總平均值為
41.85、行為量表總平均值為 54.07；迴歸分析顯示年齡、每月可支配金額為顯著預
測知識因素；每月可支配金額為顯著預測態度因素、有無小孩為顯著預測行為因
素；態度在知識與行為間存在部分中介效果。
結論：應針對獲得罕見疾病資訊主要來源進行教育宣傳；給予病友家人及病友團體
全面支持；提升民眾實際行動上的主動性。

Objectives: In this study, by understanding the current status of Taiwan people's
cognition on rare disease issues, the understanding degree of Taiwan people on rare
disease related policies, the influencing factors of cognition status, and the correlation
among knowledge, attitude and behavior were investigated.
Methods: A self-designed structured questionnaire was used to conduct an online survey
among Taiwanese people. A total of 510 Taiwanese aged 20-70 were surveyed through the
internet, with a valid response rate of 93.1%.
Results: In Taiwan, the total mean value of knowledge scale of rare diseases was 49.12,
the total mean value of attitude scale was 41.85, and the total mean value of behavior
scale was 54.07. Regression analysis showed that age and monthly disposable income
were significant predictors of knowledge. Monthly disposable income was a significant
predictor of attitude, and the presence or absence of children was a significant predictor of
behavior. Attitude has partial mediating effect between knowledge and behavior.
Conclusions: This study suggests that relevant institutions should conduct diversified
educational campaigns targeting the main sources of rare disease information, provide
more comprehensive support to patients’ families and patient groups, and increase
people's initiative in practical actions.