How to Live with Rare Diseases in Serbia: The Knowledge and Attitudes of Patients Regarding Medical, Societal and Bioethical Aspects of this Issue

Abstract

Introduction: We aimed to assess knowledge and attitudes of patients towards the issue of rare diseases in our community. Material and methods: The cross-sectional study was conducted over five weeks on outpatients and inpatients at Department for Neuromuscular Disorders. A self-completed questionnaire was delivered to 60 patients. Total response rate was 95.83%. Results: Two thirds of the respondents (70.74%) considered that know what kind of disease is defined as "rare". Despite that, only half of participants believed that suffer from rare disease. They considered that dealing with this issue in our country is extremely important (median value-9; interquartile range 8-10) and that situation of patients is difficult (median value-3.5; interquartile range 1.25-7.75). Our respondents agreed that the most serious problems regarding rare diseases issue in Serbia are the following: lack of public information (21.83%), lack of scientific knowledge (14.78%), high prices of drugs (14.08%), complicated procedures for their procurement (12.67%) etc. Finally, pharmacotherapy of rare diseases in our country can be improved by: well-timed diagnostics, raising general awareness, registration of more appropriate drugs etc. Conclusion: It is necessary to improve knowledge and attitudes of patients towards the issue of rare diseases and support them to form own association.