Author:
Hristova-Atanasova Eleonora,Iskrov Georgi,Atanasov Ivan,Genc Atilla,Stefanov Rumen
Abstract
Abstract
Background
Rare diseases (RDs) are life-threatening or chronically debilitating and offer a high level of complexity. The aim of this study is to assess medical students’ knowledge and awareness of RDs as well as their perceptions of potential measures to boost training in RDs. The cross-sectional survey was conducted at the Medical University of Plovdiv, Bulgaria, in 2019. The questionnaire contained 12 questions, divided into three main categories: (1) sociodemographic profile; (2) knowledge and awareness of RDs; and (3) attitudes about potential measures to improve training in RDs.
Results
A total of 1189 medical students completed the survey with an overall response rate of 56.4%. Only 13% of participants knew the correct definition of RDs, and a low overall level of awareness was found with regard to orphan drugs (20.3%) and genetic counselling and testing (0.5%). Respondents believed that society as a whole was largely unaware of RDs as a major public health issue. Students suggested elective courses, and invited lectures by RDs experts, and participation in research projects as the most preferred measures to improve undergraduate training.
Conclusions
It is crucial to address the gaps in medical students’ knowledge and awareness of RDs. University curricula should consider incorporating different RDs training modalities. It is essential to encourage various stakeholders to play a more proactive role and to collaborate in these activities. Involvement of patient organisations and advocacy groups might enhance students’ knowledge of the challenges faced by people with RDs. Not least, the media should be partners in this important endeavour as well.
Publisher
Springer Science and Business Media LLC
Subject
Pharmacology (medical),Genetics (clinical),General Medicine
Reference58 articles.
1. European Commission. Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions Youth., Opportunities Initiative. [Internet]. 2011 [cited 2023 Mar 16]. Available from: https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2011:0933:FIN:EN:PDF.
2. Council of the European Union. Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) [Internet]. 2009 [cited 2023 Mar 16]. Available from: https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF.
3. Schieppati A, Henter J-I, Daina E, Aperia A. Why rare diseases are an important medical and social issue. The Lancet [Internet]. 2008;371:2039–41. https://doi.org/10.1016/s0140-6736(08)60872-7.
4. Dharssi S, Wong-Rieger D, Harold M, Terry S. Review of 11 national policies for rare diseases in the context of key patient needs. Orphanet J Rare Dis [Internet]. 2017;12. https://doi.org/10.1186/s13023-017-0618-0.
5. Moliner AM. Creating a European Union Framework for actions in the field of Rare Diseases. Rare Dis Epidemiol [Internet]. 2010;457–73. https://doi.org/10.1007/978-90-481-9485-8_25.