Less than a fifth (14.9%) of doctors in Russia plan to link their career with orphan (rare) diseases, and every fifth healthcare worker needs in-depth knowledge about them. This is shown by research on the portal “Help to Rare People” and A2: Research, the results of which were reviewed by socialbites.ca.
An in-depth study of orphan pathologies is of interest to every fifth (21%) medical worker and every eighth (12%) future medical worker (students, residents and graduate students). More than half of active doctors (52%) and 45% of students and specialist candidates stated that rare diseases interest them at a basic knowledge level.
25.8% of survey participants are unsure if they want to work with orphan diseases. Participants’ doubts arise from several factors: One in five participants (20.3%) are concerned about the possibility of making medical errors, while another 20% emphasized that working with rare diseases requires a high degree of responsibility. At the same time, 39% of respondents believe that a lack of knowledge about orphan diseases prevents medical professionals from working with rare diagnoses.
Interestingly, 13.7% of the respondents stated that there were people around them with orphan diseases.
15% of healthcare professionals reported having specialized knowledge in orphan pathologies. 39% of respondents had clinical experience working with rare patients. 8% of physicians surveyed work with orphan diseases.
Regarding the diagnosis of rare diseases, one in three doctors (33%) answered that they could suspect an orphan disease in a patient, with 7% of doctors feeling confident in their ability to make an accurate diagnosis. However, 59 percent of healthcare professionals stated that they did not have enough experience to diagnose orphan diseases, and 39 percent stated that they knew where to get information about rare diseases when necessary.
One in five students, residents, and graduate students surveyed (18.8%) said they were unfamiliar with the term “orphan diseases.” 57% of students surveyed stated that they had inadequate understanding of such pathologies. At the same time, 15% of students said they wanted to learn more about rare diseases.
More than 70% of doctors believe that orphan diseases should be given more attention in educational programs at medical universities. The majority of students participating in the survey (68%) agree with this opinion.
Survey respondents also identified sources and resources that would help raise awareness of orphan diseases among professionals. According to survey respondents, the most effective of these are specialized training programs at universities, continuing education courses and clinical experience.
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