The attitudes of medical students towards rare diseases:  A cross-sectional study

Branislava Medić; Nevena Divac; Bojan Stopić; Katarina Savić Vujović; Andreja Glišić; Nataša Cerovac; Radan Stojanovic; Dragana Srebro; Milica Prostran

doi:10.2298/VSP150326094M

Branislava Medić Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Nevena Divac Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Bojan Stopić Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Katarina Savić Vujović Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Andreja Glišić Clinic for Gynaecology and Obstetrics, Clinical Center of Serbia, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Nataša Cerovac Clinic for Neurology and Psychiatry for Children and Youth, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Radan Stojanovic Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Dragana Srebro Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
Milica Prostran Department of Pharmacology, Clinical Pharmacology and Toxicology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia

DOI: https://doi.org/10.2298/VSP150326094M

Keywords: rare diseases, students, medical, education, serbia,

Abstract

Background/Aim. Rare diseases are chronic, degenerative and may lead to permanent disability. We aimed to assess knowledge and attitudes of the 3rd and 6th year medical students towards the treatment of rare diseases in Serbia. Methods. In this cross-sectional study, two samples of students were questioned for a survey: 350/446 (78.48%) students of the 3rd year, and 242/517 (46.81%) students of the 6th year. Results. Sixth year students estimated that they were more informed on the issue analyzed than the 3rd year students (median value of 4 and 3, interquartile range of 3–5, and 1–4, respectively; p < 0.05). However, a significant percentage of participants estimated incorrectly the prevalence of rare diseases according to the European Union standards (3rd year – 42.68%, 6th year - 49.55%). Core curriculum subjects were the main source of information on rare diseases (3rd year – 63.14%; 6th year – 92.14%). Our participants agreed that the most important problems are the following: high drug prices, difficult access to drugs and lack of public information. Students found, without any differences, that community access to effective drugs for rare disease should be improved (median value – 10, interquartile range 8–10 in both groups, p < 0.05). In order to improve pharmacotherapy of rare diseases in Serbia, the participants suggested establishment of a National Plan for Rare Diseases, approval of more appropriate drugs, simplified access to appropriate medicines, and more rapid diagnostics. Conclusion. It is necessary to improve the knowledge and attitudes of medical students towards pharmacotherapy of rare diseases.

References

Rare Diseases Europe (EURORDIS). 2013. About rare dis-eases. Available from: http://www.eurordis.rs/ about-rare-diseases. [accessed 2014 July 10].

Krajnovic D. Ethical and social aspects on rare diseases. Filo-zofija i društvo 2012; 23(4): 32−48.

Serbian National Organization for Rare Diseases: About rare diseases. Available from: http://www.norbs.rs/norbs-o-retkim-bolestima.php. [accessed 2014 July 10]. (Serbian)

Byrne PC. Training medical students on rare disorders. Or-phanet J Rare Dis 2012, 7(Suppl 2): A15.

Giehl J, Graessner H, Riess O. First German Academy for Further Medical Training on Rare Diseases (FAKSE, http://www.fakse.info). Orphanet J Rare Dis 2012, 7 (Suppl 2): A41.

Fasser C, von Gizycki R. EC consultation paper: „Rare diseases: Europe’s challenges“. Available from : http://ec.europa.eu/health/archive/ph_threats/non_com/docs/r161_en.pdf. [accessed 2014 June 25].

Rulebook on the List of Drugs Covered by Health Insurance. Official Gazette of the Republic of Serbia No.1/2012. (Ser-bian)

Ten years of orphan medicines legislation in Europe – Euro-pean Medicines Agency reviews success and looks ahead. Available from:

http://www.ema.europa.eu/pdfs/general/direct/pr/29156010en.pdf . [accessed 2014 June 12].

Gericke CA , Riesberg A, Busse R. Ethical issues in funding or-phan drug research and development. J Med Ethics 2005; 31(3): 164−8.

International Ethical Guidelines for Biomedical Research In-volving Human Subjects,CIOMS . http://www.cioms.ch/publications/layout_guide2002.pdf. [accessed 2014 May 23].

Prostran M, Todorović Z, Stojanović R, Potpara T, Nešić Z, Lazić J, et al. Bioethics in clinical trials: vulnerable subjects. In: Todorović Z, Prostran M, Turza K, editors. Bioethics and Pharmacology: Ethics in Preclinical and Clinical Drug Development,. 1st ed. Kerala, India: Transworld Research Network; 2012. p. P87−100.

Todorović Z, Prostran M, Medić B, Vučinić M. Bioethics and pharmacology. In: Todorović Z, Prostran M, Turza K, editors. Bioethics and Pharmacology: Ethics in Preclinical and Clinical Drug Development. 1st ed. Kerala, India: Transworld Re-search Network; 2012. p. P7−13.

National Institute for Clinical Excellence. NHS should consider paying premium prices for drugs to treat patients with very rare diseases says NICE Citizen's Council. London: NICE; 2005.

The National Alliance for people with rare diseases & all who support them. Improving Lives, optimising resources: A vision for the UK Rare Diseases Strategy. 2013. Available from: http://www.raredisease.org.uk/documents/RD-UK-Strategy-Report.pdf. [accessed 2014 May 14].

Beleva E, Yordanova R, Arizankoski D, Pete M, Haralampiev E, Stefanov R. Awareness about rare diseases among medical students in Bulgaria-preliminary results. Available from: http://conf2009.raredis.org/posters/Poster%2077%20-20Ralitsa%20Yordanova.pdf. [accessed 2014 June 1].

Miteva TS, Jordanova R, Iskrov G, Stefanov R. General knowledge and awareness on rare diseases among general practitioners in Bulgaria. Georgian Med News 2011; 193: 16−9.

Taylor CM, Karet Frankl FE. Developing a strategy for the management of rare diseases. BMJ 2012; 344: e2417.

Rare Diseases Europe (EURORDIS). 2013. Europlan project. Available from: http://www.eurordis.org/the-europlan-project. [accessed 2014 June 15].