Information needs of physicians regarding the diagnosis of rare diseases: a questionnaire-based study in Belgium
Information needs of physicians regarding the diagnosis of rare diseases: a questionnaire-based study in Belgium
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DOI：
10.1186/s13023-019-1075-8
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发表时间：
2019-05-04
影响因子：
3.7
通讯作者：
Huys, Isabelle
中科院分区：
文献类型：
--
作者：
Vandeborne, Liese;van Overbeeke, Eline;Huys, Isabelle
研究背景罕见病患者的延误诊断和误诊是常见的，往往会给患者带来医疗、身心负担，给患者家属带来经济和情感负担。医生对罕见病的认识不足被认为是罕见病患者迟诊和误诊的原因之一。本研究的目的是调查如何根据比利时医生的需求和偏好定制信息和教育，以提高他们对罕见疾病的认识，并支持他们诊断罕见疾病患者。2016年12月，对比利时罕见病专家进行了9次探索性访谈，以帮助制定关于医生及其罕见病意识和诊断咨询信息来源的信息需求问卷。然后在2017年1月和2月由比利时医生（n=295）完成了这份在线问卷，包括全科医生（GP）、儿科医生和其他专家（即神经科医生、儿科神经科医生、内分泌科医生和儿科内分泌科医生）。受访专家表示，医生的学术和继续医学教育应更多地关注红旗，以提高日常临床实践中对罕见病的关注。全科医生对他们在罕见病方面的学术教育的评分为不足，但儿科医生和其他专家的评分明显更高（p
BackgroundLate and misdiagnoses of rare disease patients are common and often result in medical, physical and mental burden for the patient, and financial and emotional burden for the patient's family. Low rare disease awareness among physicians is believed to be one of the reasons for these late and misdiagnoses of rare disease patients. The aim of this study was to investigate how information and education could be tailored to the needs and preferences of physicians in Belgium to increase their rare disease awareness and support them in diagnosing patients with a rare disorder. Nine exploratory interviews with Belgian rare disease experts were performed in December 2016 to help the development of a questionnaire on information needs of physicians and their consulted information sources in rare disease awareness and diagnosis. This online questionnaire was then completed by Belgian physicians (n=295), including general practitioners (GPs), pediatricians and other specialists (i.e. neurologists, pediatric neurologists, endocrinologists and pediatric endocrinologists) during January and February 2017.ResultsRare disease knowledge and awareness were the lowest among GPs and the highest among specialists. Interviewed experts indicated that physicians' academic and continuous medical education should be focused more on red flags to increase rare disease attentiveness in daily clinical practice. GPs scored their academic education on rare diseases as insufficient but pediatricians and other specialists scored it significantly better (p