医护专业学生对罕见病的了解——针对性教育的效果。

Knowledge of rare diseases among health care students – the effect of targeted education.

作者信息

Jonas Kamil, Waligóra Marcin, Hołda Mateusz, Sulicka-Grodzicka Joanna, Strach Magdalena, Podolec Piotr, Kopeć Grzegorz

机构信息

Jagiellonian University Medical College, Department of Cardiac and Vascular Diseases, Centre for Rare Cardiovascular Diseases at John Paul II Hospital, Kraków, Poland

Jagiellonian University Medical College, Students’ Scientific Group, Department of Cardiac and Vascular Diseases, Kraków, Poland

出版信息

Przegl Epidemiol. 2017;71(1):80-89.

PMID:28742309

Abstract

BACKGROUND

Poor knowledge on rare diseases (RD) results in a significant delay in their diagnosis and treatment. So far there are no standards of university education in RD. We assessed knowledge on RD among healthcare students and the effectiveness of targeted education.

METHODS

We conducted an internet-based survey among students of the faculty of medicine, pharmacy and health sciences. Questions regarded personal information, definition and epidemic data on RD. The survey was used to assess the effect of targeted education about RD in an additional group of students.

RESULTS

We enrolled 270 students (females: n=181; 67%), aged 22±1.7 years. Most of them (87.8%) declared to be familiar with the term RD. However only 20.7% knew the correct definition of RD, 14% knew that RD affect a significant (6-8%) proportion of population, 21.4% that there are 5-8 thousands of different RD’ entities, 73.7% recognized the most common cause of RD. 12.6% knew, that the RD most frequently occur in the adulthood. Targeted education applied in the additional group of 18 students resulted in a significant improvement of students’ knowledge on RD: definition (by 33%; p=0.007), percentage of population affected by RD (by 67%; p=0.001 ), total number of different RD (by 61%; p=0.003), time of onset of RD (by 61% p=0.003).

CONCLUSIONS

Despite the declared recognition of the term: RD, knowledge on RD among medical students is poor independently on the year of study. However it can be improved with use of targeted education.

摘要

背景

对罕见病的了解不足导致其诊断和治疗出现显著延迟。到目前为止，尚无罕见病大学教育标准。我们评估了医学生对罕见病的了解情况以及针对性教育的效果。

方法

我们对医学、药学和健康科学专业的学生进行了一项基于互联网的调查。问题涉及个人信息、罕见病的定义和流行数据。该调查用于评估另一组学生中关于罕见病的针对性教育的效果。

结果

我们招募了270名学生（女性：n = 181；67%），年龄为22±1.7岁。他们中的大多数（87.8%）宣称熟悉罕见病这个术语。然而，只有20.7%的人知道罕见病的正确定义，14%的人知道罕见病影响相当大比例（6 - 8%）的人口，21.4%的人知道有5000 - 8000种不同的罕见病实体，73.7%的人认识到罕见病最常见的病因。12.6%的人知道罕见病最常发生在成年期。对另外18名学生进行的针对性教育使学生对罕见病的了解有了显著提高：定义（提高了33%；p = 0.007）、受罕见病影响的人口百分比（提高了67%；p = 0.001）、不同罕见病的总数（提高了61%；p = 0.003）、罕见病的发病时间（提高了61%，p = 0.003）。