According to the literature review, no studies were found in Iran examining the knowledge of future healthcare professionals about RD. Due to the growing understanding of the medical community about genetically based diseases, there is a need for educational programs in the area of RD in particular. As a result, future healthcare professional often do not receive the necessary training in RD (12).
Consistent to previous studies (12–15), the results of the present study showed that future healthcare professionals receive little education about RD. Although almost all of the participating students were familiar with RD and most believed that RD was due to genetic factors, they had little knowledge of the epidemiology of RD. Many students have used the "I do not know" option and the problem of insufficient education is evident during their studies. In Iranian medical universities, basic sciences including biochemistry, physiology as well as genetics are taught in the first year. Regarding to the major, it may continue or not. Numerous RDs such as PKU, CF, Huntington disease, and sickle cell disease are included in genetics courses. In addition to the diseases, diagnostic tests and major clinical manifestations are also taught. We suppose that medical sciences students (MSSs) learn the knowledge on RDs randomly and casually. The premise is according to the following reasons: 1) while most of students were aware of their knowledge deficits, they had unsatisfactory level of information on RDs. 2) RDs are not taught as a separate subject and in a systematic comprehensive form. Rather, it is considered a subset of genetics. So all of MSSs are deprived of training in relation to RDs. In line with our findings, previous studies (9, 16) authenticate the fact that the retention of MSSs’ knowledge and skills is compromised.
In the present study, some of MSSs has selected the following diseases as RDs mistakenly: Crohn’s disease (31.6%), Cerebral palsy (25.7%), and Glaucoma (21%). The above-mentioned diseases are kind of those which are well discussed in the classes. Confusing them with RDs shows that despite MSSs would be able to present a simplified way of dealing with a given disease, frequently they do not identify them correctly. More interestingly, in high school education some basic information about genetic disorders and RDs is already present, therefore this problem is rooted in educational system which is consistent with Williams’ findings (17) These results indicate that medical sciences curriculum is likely to be disrupted and inappropriate.
Moreover, there is not a specific course, guideline or recommendations at Iranian universities pertaining to RDs. Our medical education system usually focuses on more prevalent disorders and prepare students for facing conventional diseases rather than rare ones. More studies in this field is needed to determine whether an elective or mandatory course on RDs should be included in the medical education curriculum.
Additionally, preparing a comprehensive content including multidimensional information about RDs like prevalence, incidence, relevance of RDs to everyday medical care, early detection, potential strategies to dwindle it and the last but not least, the challenges that healthcare workers face with during admission of RD patients is definitely necessary. Healthcare workers have to know sources of information and support for RD patients to help RD patients’ family and caregivers.
McKay’s (18) suggest that teaching programs should not focus on any particular RD. There are near 6,000–8,000 different types of RDs and focusing on the whole RDs is actually impossible. Trying to raise public awareness about cursory knowledge on the prevalence and incidence of RDs would be of profound importance. Pisklakov acknowledges that health professionals’ false beliefs may interfere with their attitude and disrupt the situations. This is of key importance because health professionals’ false beliefs in their knowledge and skills makes it difficult to change the situation of patients with rare diseases (19) Alawi et al. (20) suggest to use RDs as a teaching model to transfer the basic sciences and clinical practice to students.
To sum up, the present study shows that insufficiency of medical curriculum about RDs cause knowledge and skills deficits in MSSs, so that they cannot diagnose those diseases or provide appropriate care for patients. It is of key importance to make MSSs aware of their deficits. Then address the desperate desire for improvement of medical education on RDs through obligatory lectures and seminars, journal clubs and group discussions.