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

10.6288/TJPH201534103083

李雅琪(Ya-Chi Lee)；劉潔心(Chieh-Hsing Liu)；王建得(Jiaan-Der Wang)

自學式手冊 ； 醫師 ； 罕見疾病 ； 急性紫質症 ； self-instructional manual ； physician ； rare disease ； acute porphyria

台灣公共衛生雜誌

34卷2期（2015 / 04 / 15）

143 - 155

繁體中文

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.

1. 衛生福利部國民健康署：公告罕見疾病名單暨ICD-9-CM編碼一覽表。 http://www.hpa.gov.tw/Bhpnet/Web/HealthTopic/TopicBulletin.aspx?No=201501150001&parentid=200712250007。引用2015/02/01。Health Promotion Administration, Ministry of Health and Welfare, R.O.C. (Taiwan). The list of rare diseases and their ICD-9-CM codes. Available at: http://www.hpa.gov.tw/Bhpnet/Web/HealthTopic/TopicBulletin.aspx?No=201501150001&parentid=200712250007. Accessed February 1, 2015. [In Chinese]
2. Allen, SN,Mahan, JM,Graham, I(1979).The implementation of a large-scale self-instructional course in medical information resources.Bull Med Libr Assoc,67,302-7.
3. Anderson, KE,Bloomer, JR,Bonkovsky, HL(2005).Recommendations for the diagnosis and treatment of the acute porphyrias.Ann Intern Med,142,439-50.
4. Chambers, DW(2006).Estimating transfer of learning for self-instructional packages across dental schools.J Dent Educ,70,142-8.
5. Davies, MA,Gale, J,Clarke, WD(1977).Audiotape and booklet self-instructional materials in physiology: an evaluation of their effectiveness and acceptability in the pre-clinical curriculum.Med Educ,11,370-3.
6. Shafer, JA,Weed, RI,Johnson, W(1973).Evaluation of a self-instructional program in red cell morphology.J Med Educ,48,1133-9.
7. Stritter, FT,Burford, HJ,Johnson, SR,Talbert, LM(1973).Documentation of the effectiveness of selfinstructional materials.J Med Educ,48,1129-32.
8. Swank, C,Christianson, CA,Prows, CA,West, EB,Warren, NS(2001).Effectiveness of a genetics self-instructional module for nurses involved in egg donor screening.J Obstet Gynecol Neonatal Nurs,30,617-25.
9. Teles, M,Bhupali, P,Madhale, M(2013).Effectiveness of self instructional module on knowledge and skills regarding use of Glasgow Coma Scale in neurological assessment of patients among nurses working in critical care units of KLE Dr. Prabhakar Kore Hospital and Medical Research Centre, Belgaum.JKIMSU,2,98-104.
10. 吳明隆、涂金堂(2011)。SPSS與統計應用分析。台北=Taipei:五南圖書出版股份有限公司=Wu-Nan Book Inc.。
11. 李絳桃(2002)。台北=Taipei，國立台灣師範大學衛生教育系=Department of Health Promotion and Health Education, National Taiwan Normal University。
12. 林志鴻(2001)。,台北=Taipei:財團法人罕見疾病基金會=Taiwan Foundation for Rare Disorders。
13. 胡月娟、彭孃慧、劉新莉(2010)。護理研究過程與實務。新北市=New Taipei City:新文京出版社=New Wun Ching Developmental Publishing。
14. 唐先梅、曾敏傑(2007)。罕見疾病基因診斷的倫理觀─醫病間的差異。優生保健暨罕見疾病防治學術論文集，台中=Taichung:
15. 張展維、江睿玲、鄭奕帝(2006)。急性間歇性紫質症的治療。適用罕見疾病防治及藥物法之藥物年報，5，24-7。
16. 張淑芳、陳靜敏、陳品玲(2001)。衛生教育介入對於社區婦女在預防骨質疏鬆知識、健康信念及行為成效之探討。新台北護理期刊，3，79-89。
17. 張學祿(2004)。台北=Taipei，國防醫學院牙醫科學研究所=Graduated Institute of Dental Science, National Defense Medical Center。
18. 陳合如(2003)。台北=Taipei，國立台灣師範大學衛生教育系=Department of Health Promotion and Health Education, National Taiwan Normal University。
19. 陳嘉玲(2006)。台北=Taipei，國立台灣師範大學衛生教育系=Department of Health Promotion and Health Education, National Taiwan Normal University。
20. 陳麗淑(1997)。台北=Taipei，國立台灣師範大學衛生教育系=Department of Health Promotion and Health Education, National Taiwan Normal University。
21. 楊智琳(2004)。台北=Taipei，國立台灣師範大學衛生教育系=Department of Health Promotion and Health Education, National Taiwan Normal University。
22. 劉潔心、劉貴雲、蔡春美(2000)。青少年互動式戒菸自助手冊教材發展及介入效果之初探性研究。衛生教育學報，13，73-90。
23. 薛錦滿(2013)。台北=Taipei，國立台北護理健康大學醫護教育研究所=Graduate Institute of Health Allied Education, National Taipei University of Nursing and Health Sciences。

1. 范卉妤、邱銘心(2016)。罕見疾病兒童與青少年之主要照護者資訊需求與資訊行為研究。圖書資訊學刊，14(2)，127-153。