BACKGROUND Rare diseases are a priority objective for public health systems. Given its complexity, late and misdiagnoses occur very often which causes mental and physical burden for patients and family. This would be caused, in part, for unprepared clinicians in this field. The aim of this study was to report the training needs and the perceived shortcomings of Spanish physicians of the public health system in the diagnosis, treatment and monitoring of patients with rare diseases. METHODS We used a descriptive cross-sectional study through an "ad hoc" survey of 26 questions was completed by 132 primary care physicians and 37 specialists during April and May 2018. RESULTS Less than a third of the physicians had received training in rare disease during their undergraduate or postgraduate years, and for hospital professionals, they received more training in the postgraduate period. CONCLUSION Primary care physicians and specialists showed low training level in rare diseases. An academical and continuous program on rare disease, as well as, multidisciplinary units and high quality practice guidelines are necessary to help to prevention and support clinical decisions and improve quality of care of patients and families.

中文翻译：

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西班牙医生对罕见病的教育和信息需求。

背景技术罕见疾病是公共卫生系统的优先目标。由于其复杂性，很容易发生晚期和误诊，这给患者和家庭造成了身心负担。这部分是由于该领域没有准备的临床医生造成的。这项研究的目的是报告公共卫生系统的西班牙医师在诊断，治疗和监测罕见病患者方面的培训需求和公认的缺点。方法我们通过“临时性”调查对描述性横断面研究进行了描述性调查，该调查由132名初级保健医生和37名专家在2018年4月和5月期间完成了26个问题。结果在此期间，不到三分之一的医生接受了罕见病的培训他们的本科或研究生学历，对于医院专业人员，他们在研究生期间接受了更多的培训。结论基层医疗的医生和专家对罕见病的培训水平较低。一个关于罕见病的学术性和连续性计划，以及多学科的单位和高质量的实践指南对于帮助预防和支持临床决策并提高患者和家庭的护理质量是必要的。