General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.
General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.
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DOI：
10.3390/ijerph15061180
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发表时间：
2018-06-05
影响因子：
--
通讯作者：
Van Casteren V
中科院分区：
文献类型：
--
作者：
Boffin N;Swinnen E;Wens J;Urbina M;Van der Heyden J;Van Casteren V
在一般实践中几乎没有关于罕见病的研究。本研究考察了比利时哨点全科医生网络（SGP）中活动性罕见病患者的护理特点，并通过病例量、全科医生（GP）患者就诊频率和全国流行率分析了罕见病在全科医生中的重要性。SGP报告了以下数据：(i) 2015年活跃的罕见病患者数量；（ii）一至三名最近就诊患者的特征。罕见病与孤儿匹配（）。全科医生就诊频率和患者年龄与全科医生总人数进行比较。来自121名活跃患者（中位年龄：44岁，四分位间距（IQR） 24-60）的详细信息显示，36.9%的全科医生是罕见疾病的第一护理人员，35.8%的全科医生建立了诊断转诊。全科医生将他们对患者疾病的了解程度评定为中等，14.9%的患者使用了Orphanet。111名SGP中有66名报告了任何活动性罕见疾病患者（中位数：1，IQR 0-2）。与全科人群相比，全科医生的平均就诊频率更高(7.3次；95%置信区间（CI） 6.1-8.5比5.4；95% ci 5.4-5.4)。据估计，比利时全科人群中罕见病的患病率为12.0 / 10,000（95%置信区间为10.3-13.9）。本研究承认全科医生在罕见疾病护理中的重要作用。提高全科医生对孤儿护理的认识和使用。
There are almost no studies about rare diseases in general practice. This study examined care characteristics of active rare disease patients in the Belgian Network of Sentinel General Practices (SGP) and the importance of rare diseases in general practice by its caseload, general practitioner (GP)–patient encounter frequency and nationwide prevalence. The SGP reported data about: (i) the number of active rare disease patients in 2015; and (ii) characteristics of one to three most recently seen patients. Rare diseases were matched against Orphanet (). GP encounter frequency and patients’ age were compared to the total general practice population. Details from 121 active patients (median age: 44, interquartile range (IQR) 24–60) showed that for 36.9% the GP had been the first caregiver for the rare disease and for 35.8% the GP established a diagnostic referral. GPs rated their knowledge about their patients’ disease as moderate and used Orphanet for 14.9% of patients. Any active rare disease patients (median: 1, IQR 0–2) were reported by 66 of 111 SGP. Compared to the total general practice population, the mean GP encounter frequency was higher (7.3; 95% confidence intervals (CI) 6.1–8.5 versus 5.4; 95% CI 5.4–5.4). The prevalence of rare diseases in the Belgian general practice population was estimated at 12.0 (95% CI 10.3–13.9) per 10,000. This study acknowledges the important role of GPs in rare disease care. Knowledge and use of Orphanet by GPs could be improved.
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影响因子：
2.5
作者：
Avellaneda Fernandez, Alfredo;Izquierdo Martinez, Maravillas;Ramon, Jose R
通讯作者：
Ramon, Jose R
影响因子：
--
作者：
Avellaneda Fernandez, A;Perez Martin, A;Izquierdo Martinez, M
通讯作者：
Izquierdo Martinez, M
影响因子：
4.5
作者：
Richter, Trevor;Nestler-Parr, Sandra;Hughes, Dyfrig A.
通讯作者：
Hughes, Dyfrig A.
DOI：
10.1007/978-90-481-9485-8_14
发表时间：
2010-01-01
期刊：
RARE DISEASES EPIDEMIOLOGY
影响因子：
--
作者：
Kole, Anna;Faurisson, Francois
通讯作者：
Faurisson, Francois
影响因子：
1.6
作者：
McClain, Monica R.;Cooley, W. Carl;Smith, Andrew
通讯作者：
Smith, Andrew