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未来医疗保健专业人员对罕见病的认知与态度。

Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases.

作者信息

Domaradzki Jan, Walkowiak Dariusz

机构信息

Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Poznań, Poland.

Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.

出版信息

Front Genet. 2021 May 28;12:639610. doi: 10.3389/fgene.2021.639610. eCollection 2021.

Abstract

Caring for patients suffering from a rare disease (RD) requires the special and combined efforts of different healthcare professionals, including nurses, physiotherapists and physicians. Nevertheless, Poland still lacks a national plan for RDs and the undergraduate and postgraduate education of future healthcare professionals on RDs is also inadequate. Thus, the aim of this study was to assess the awareness of RDs among nursing, physiotherapy and medical students in Poland. It shows that although 98% of respondents had heard of the term "rare disease," most students had problems in defining the most common causes of RDs and their prevalence. Students also lacked basic knowledge about the healthcare system for RD patients in the country. While over 95% of future nurses, physiotherapists and physicians assessed their knowledge about RDs as insufficient or very poor, almost 92% of medical students, and 84% of physiotherapy and nursing students, did not feel prepared for caring for RD patients. Furthermore, although the vast majority of respondents declared eagerness to broaden their knowledge on RDs, only 45% of medical students, 76% of nursing students and 88% of physiotherapy students believed that RDs should be included into the medical curricula. Simultaneously, for most students the Internet was the prime source of information on RDs. It is concluded that as caring for RD patients requires a multidisciplinary approach, by identifying the gap in the education of future nurses, physiotherapists and physicians this study shows that there is an urgent need of better education about RDs among future healthcare professionals.

摘要

照顾患有罕见病(RD)的患者需要包括护士、物理治疗师和医生在内的不同医疗保健专业人员的特殊和共同努力。然而,波兰仍然缺乏针对罕见病的国家计划,并且未来医疗保健专业人员在本科和研究生阶段关于罕见病的教育也不足。因此,本研究的目的是评估波兰护理、物理治疗和医学专业学生对罕见病的认知情况。研究表明,尽管98%的受访者听说过“罕见病”这个术语,但大多数学生在定义罕见病最常见的病因及其患病率方面存在困难。学生们也缺乏关于该国罕见病患者医疗保健系统的基本知识。虽然超过95%的未来护士、物理治疗师和医生认为他们对罕见病的了解不足或非常差,但几乎92%的医学专业学生以及84%的物理治疗和护理专业学生觉得自己没有为照顾罕见病患者做好准备。此外,尽管绝大多数受访者表示渴望拓宽对罕见病的了解,但只有45%的医学专业学生、76%的护理专业学生和88%的物理治疗专业学生认为罕见病应该纳入医学课程。同时,对大多数学生来说,互联网是关于罕见病信息的主要来源。研究得出结论,由于照顾罕见病患者需要多学科方法,通过识别未来护士、物理治疗师和医生教育中的差距,本研究表明未来医疗保健专业人员迫切需要接受关于罕见病的更好教育。

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