[Perception of rare diseases by the primary care physicians].
[Perception of rare diseases by the primary care physicians].
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DOI：
10.1016/j.semerg.2012.02.011
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发表时间：
2012-10-01
期刊：
影响因子：
--
通讯作者：
Izquierdo Martinez, M
中科院分区：
文献类型：
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作者：
Avellaneda Fernandez, A;Perez Martin, A;Izquierdo Martinez, M
目的：确定导致初级卫生保健医生（PHCP）对罕见病（RD）整体看法的因素，并分析这些罕见病患者的特征。方法：描述性横断面研究。 PHCP 在 2008 年至 2010 年期间完成的调查用于探索社会人口统计数据、医疗保健设施、人力和服务、知识水平、期望、获取可用信息的方式以及 RD 的培训支持偏好。 结果：总共分析了 260 份问卷。平均知识水平为 3.68 (SD 1.93)，兴趣为 7.34 (SD 2.02)，重要性为 7.51 (SD 1.69)。不到四分之一 (20.4%) 的受访者进行了一些培训活动。家庭护理（6.38，SD 2.07）是最有价值的长期护理选择，强调一级预防的必要性（7.63 SD 1.5）。超过三分之一（35%）申请了一些援助，主要是经济援助（37.4%）。互联网是他们的主要信息来源（71.2%），平均 7.85 人（SD 2.38）认为需要进行特定的继续培训。根据登记名单，每位专业人员平均照顾 2.45 (SD 3.69) 名 RD 患者，其中 1.604% 有暂时工作残疾，1.479% 有一定残疾，1.62% 有依赖情况。 RD患者的随访情况为：医院层面55.72%，特殊咨询单位44.34%，专家39.75%，PHCP层面14.46%。结论：PHCP对RD的了解程度较低，但兴趣较高，强调一级预防、家庭环境的重要性、遗传咨询和健康教育。他们很少为 RD 请求医疗资源。互联网是他们的主要信息来源，并且更喜欢特定的继续教育课程。
OBJECTIVES: Identify the elements that lead to the perception that primary health care physicians (PHCP) have as regards rare diseases (RD) as a whole, and to analyse the characteristics of these patients with rare diseases.METHODS: Descriptive cross-sectional study. Surveys completed by PHCP during the years 2008-2010 were used to explore socio-demographic data, health care facilities, manpower, and services, knowledge level, expectations, means of obtaining available information, and training-support preferences of RD.RESULTS: A total of 260 questionnaires were analysed. The average level of knowledge was 3.68 (SD 1.93), of interest 7.34 (SD 2.02), and of importance 7.51 (SD 1.69). Less than one quarter (20.4%) of responders had done some training activity. Care at home (6.38, SD 2.07) is the most valued long term care option, emphasising the need of primary prevention (7.63 SD 1.5). Over one-third (35%) applied for some aid, mainly economic (37.4%). Internet is their main source of information (71.2%), and an average of 7.85 (SD 2.38) perceived the need for specific continuing training. By registered lists, each professional attends a mean of 2.45 (SD 3.69) patients with RD, 1.604% having temporary work disability, 1.479% having some disability and 1.62% with a dependence situation. The follow up of RD patients was: at Hospital level 55.72%, by special reference units 44.34%, by specialists 39.75%, and exclusively at PHCP level 14.46%.CONCLUSIONS: PHCP have a low level of knowledge of RD, although a high interest, with emphasis on primary prevention, the importance of the family environment, genetic counselling and health education. They rarely request medical resources for RD. Internet is their main source of information, and prefer specific continuing education courses.