[Need for primary care training in rare diseases].
[Need for primary care training in rare diseases].
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DOI：
10.1157/13093372
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发表时间：
2006-10-15
影响因子：
2.5
通讯作者：
Ramon, Jose R
中科院分区：
文献类型：
--
作者：
Avellaneda Fernandez, Alfredo;Izquierdo Martinez, Maravillas;Ramon, Jose R
目的：通过定性研究探讨罕见疾病(RD)初级保健(PC)培训的必要性问题。方法：通过自然研究方法(深度访谈和群体动力学)，我们试图发现西班牙马德里社区城乡RD初级保健(PC)培训的个人和专业内涵。结构式访谈的内容包括：挑战与研发定义；研发的专业经验；个人研发与研发的相关性；研发的培训与资讯；研发的需求与需求。结果：城乡及不同专业组别的研发需求并无差异。研发的概念相对不为人所知，在理解这些疾病的规模和总体重要性方面出现了困难。研发概念也没有表达这些疾病的严重性或影响。结论：受访专业人员认为本科培训就足够了，拒绝研究生培训是不必要和不可行的。通过互联网搜索活跃的信息是获得数据以优化患者转诊标准的最好方式。因此，西班牙语罕见疾病信息系统(Sistema de Informacion de Enfermedade Raras en Espano，http://iier.isciii.es/er))满足了人们对信息的需求。
OBJECTIVES: The problem of the need for primary care (PC) training in rare diseases (RD) is approached through a qualitative research study that tries to define its relevance and to identify the need for RD training in PC.METHODS: By means of naturalistic research methods (in-depth interviews and group dynamics), we tried to discover the personal and professional connotations of PC training in RD in the rural and urban areas of the Community of Madrid, Spain. The areas explored by means of structured interview were: challenges and RD definition; professional experience with RD; relevance of PC for RD; training and information in RD; needs and demands for RD in PC.RESULTS: We found no differences between the rural and urban groups nor between different professional categories. The RD concept was relatively unknown and difficulties arose in understanding the magnitude and overall importance of these diseases. Nor did the RD concept express the severity or the repercussions of these diseases. RDs awoke little professional interest, in contrast with the human interest aroused.CONCLUSIONS: The professionals interviewed thought that undergraduate training was sufficient, and rejected postgraduate training as unnecessary and unfeasible. The search for active information through Internet was the best way to obtain data to optimize criteria for patient referral. As such, the Information System for Rare Diseases in Spanish (Sistema de Informacion de Enfermedades Raras en Espanol, SIERE) (http://iier.isciii.es/er) meets the demands for information.