Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.
Department of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, Poznań, Poland.
Front Public Health. 2022 Apr 8;10:872648. doi: 10.3389/fpubh.2022.872648. eCollection 2022.
Although national plans or strategies for rare diseases (RDs) have been implemented in many jurisdictions research show that one of the main barriers RD patients face during medical encounter is medical professionals' low level of knowledge and experience on the diagnosis, treatment and rehabilitation of RD patients. Consequently, there is a need to increase the standards of medical education in the field of RDs and to revise the undergraduate and postgraduate training programs. However, while studies on medical education in the field of RDs has been conducted in various countries across the both Americas, Asia or the European Union, still little is known about the awareness of RDs among healthcare professionals in the Republic of Kazakhstan. Thus, we conducted a survey among 207 medical students and 101 medical doctors from the West Kazakhstan Marat Ospanov Medical University, Aktobe, Kazakhstan. The study was conducted between March and May 2021. The questionnaire assessed their knowledge about the number, examples, etiology and estimated frequency of RDs. It also evaluated respondents self-assessment of competence in RDs. Although the majority of respondents agreed that RDs constitute a serious public health issue both medical students and medical doctors showed insufficient knowledge on the etiology, epidemiology and prevalence of RDs, and many had problems with separating RDs from more common disorders. Moreover, they also lacked knowledge about and the central register of RD patients and reimbursement of orphan drugs in Kazakhstan. Finally, while almost half respondents declared having had classes about RDs during their studies most perceived their knowledge about RDs as insufficient or poor and felt unprepared for caring for RD patients. Additionally, although majority of respondents in both groups believed that all physicians, regardless of their specialization, should possess knowledge on RDs many respondents did not look for such information at all.
虽然许多司法管辖区已经实施了罕见病（RDs）的国家计划或战略，但研究表明，RD 患者在医疗过程中面临的主要障碍之一是医疗专业人员在 RD 患者的诊断、治疗和康复方面知识和经验不足。因此，需要提高 RD 领域医学教育的标准，并修订本科和研究生培训计划。然而，虽然在美洲、亚洲或欧盟的许多国家都开展了关于 RD 领域医学教育的研究，但哈萨克斯坦共和国的医疗保健专业人员对 RD 的认识仍然知之甚少。因此，我们在哈萨克斯坦阿克托贝的西哈萨克斯坦 Marat Ospanov 医科大学对 207 名医学生和 101 名医生进行了一项调查。该研究于 2021 年 3 月至 5 月进行。问卷评估了他们对 RD 数量、示例、病因和估计频率的了解。它还评估了受访者对自己在 RD 方面能力的自我评估。尽管大多数受访者认为 RD 是一个严重的公共卫生问题，但医学生和医生对 RD 的病因、流行病学和流行率的了解不足，许多人在将 RD 与更常见的疾病区分开来时存在问题。此外，他们还缺乏关于 RD 患者中央登记册和哈萨克斯坦孤儿药报销的知识。最后，虽然近一半的受访者在学习期间宣布上过 RD 课程，但大多数人认为他们对 RD 的了解不足或较差，并且对照顾 RD 患者感到准备不足。此外，尽管两组中的大多数受访者都认为所有医生，无论其专业如何，都应该具备 RD 方面的知识，但许多受访者根本没有寻找此类信息。
