自學式手冊介入策略對醫師面對罕見疾病急性紫質症之影響

The Effect of an Acute Porphyria Self-Instruction Manual on Physicians

目標：本研究目的旨在探討以自學式手冊介入策略，對醫師面對罕見疾病急性紫質症的知識、態度與自我效能之影響。方法：本研究採用實驗組控制組前後測設計，並採立意取樣方式選取國內特定科別之臨床醫師為研究對象。研究工具為自行設計之自填式結構性問卷，問卷內容經信效度檢定及進行預試分析而完成。而自學式手冊內容為參考國內外相關文獻、訪談醫師和急性紫質症病患後，自行編製發展而成，最後經專家學者審閱後定稿。本研究招募方式採陌生拜訪，兩組前後測間隔時間相等，最終收得40位實驗組醫師及48位對照組醫師。其介入成效以單因子共變數分析方式檢定其成果。結果：研究結果顯示，自學式手冊內容符合醫師需求，且經介入後醫師在面對急性紫質症的知識、態度、自我效能等三方面，均達統計上顯著差異。結論：本研究為國內首次以衛生教育觀點，對醫師進行罕見疾病衛生教育之介入研究，其自學式手冊可供醫師參考使用，而研究成果可供未來罕病防治之參考。

Objectives: The aim of this study was to investigate the effect of a self-instruction manual for physicians dealing with acute porphyria. Methods: This study was based on a 'pretest-posttest control group design' and selected specific field physicians as the target audience. A self-administered structured questionnaire was developed. The content of the manual was based on the relevant literature and interviews with physicians and patients, and finalized with expert reviews. Finally, we collected data from 40 physicians in the experimental group and 48 physicians in the control group (they had never met before, were randomly chosen and were willing to answer to our questionnaire), using the same time interval between the pre-test and the post-test. The intervention effects were evaluated by using one way analysis of covariance (ANCOVA). Results: The self-instruction manual increased knowledge, attitude, and self-efficiency with regard to acute porphyria, and all of these differences were statistically significant. Conclusions: To the best of our knowledge, this was the first time that the impact of a self-instruction manual on physicians dealing with a rare disease was studied in Taiwan. A self-instruction manual can provide a reference for physicians, and the results of this research can serve as a model for future references about rare diseases.