Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study

Abstract

Background Rare diseases are a new global health priority, requiring evidence-based estimates of the global prevalence of diseases to inform public policymakers and provide a serious challenge to the healthcare system that must not be ignored. The purpose of this study is to investigate Iranian future healthcare professionals' knowledge and opinions about rare diseases. Results A total of 6838 students responded to the questionnaire. Nursing and medical students had the highest participation. Almost 85% of participants rated their knowledge about rare diseases as poor or insufficient. While nearly 70 percent of participants took courses about rare diseases at university. Finally, 72.7% of future healthcare professionals did not feel ready to take care of a patient with a rare disease. Conclusion The present study has indicated a gap in Iranian medical students’ knowledge of rare diseases. The researchers believe that health science policymakers should make a joint effort to improve knowledge about rare diseases. Including courses with regard to rare diseases would be of benefit to future healthcare professionals.

What is the awareness of rare diseases among medical students? A survey in Bulgaria

“…This study con rmed previous ndings from other countries that medical students generally lack knowledge and awareness of RD [19,20,[23][24][25]. While there was some disagreement between the two groups of respondents in our research, they largely found common ground on the most important issues and expressed support for similar measures to improve undergraduate training in RD.…”

“…In all the studies conducted so far, medical students acknowledged the need for more concentrated training in RD by mentioning elective courses in RD and inviting lectures by RD experts as potential options to boost medical undergraduate education on RD. Participation in RD research projects and scienti c events is also welcome by the respondents to those surveys [19,20,[23][24][25][26][33][34][35][36]. In our study, we witnessed comparable gaps in knowledge in both students trained in Bulgarian and in English.…”

“…It could take between 3 and 14 years from the onset of symptoms to a nal diagnosis for certain RD. Social consequences like isolation and discrimination additionally severe the impact of RD on the patients affected and their families [17][18][19][20][21]. All this considered, undergraduate medical education appears to be a major pillar for a sustainable, long-term improvement of care for RD patients and their families.…”

Activities of Clinical Expertise and Research in a Rare Disease Referral Centre: A Place for Telemedicine beyond the COVID-19 Pandemic?

“…Quite often, this consists mostly of providing clinical counseling to other practitioners unfamiliar with such conditions. Recent studies show that rare disease awareness is insufficient among senior physicians and medical students, partly due to inadequate academic training [10][11][12]. Consequently, delivering expert opinions is an essential part of the daily life of rare disease centres, one that is highly time-consuming, insufficiently visible and acknowledged and often inadequately compensated.…”