Addressing the Value of Multidisciplinary Clinical Care in Huntington's Disease: A Snapshot of a New Huntington's Disease Center
Addressing the Value of Multidisciplinary Clinical Care in Huntington's Disease: A Snapshot of a New Huntington's Disease Center
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DOI：
10.3233/jhd-190355
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发表时间：
2019-01-01
影响因子：
3.1
通讯作者：
Gonzalez-Alegre, Pedro
中科院分区：
文献类型：
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作者：
Bardakjian, Tanya M.;Klapper, Jennifer;Gonzalez-Alegre, Pedro
背景：亨廷顿病（HD）的临床护理通常由经验丰富的多学科中心提供。然而，这些中心的价值和HD家庭的吸收仍然未知。目的：描述一个新的HD中心提供的服务，包括估计的捕获人口served.Methods：回顾性审查的HD中心在2015年推出，包括定量和定性数据的诊所访问，人口统计学和临床数据。我们观察到每年诊所就诊人数的快速持续增长，对诊所内多学科护理的需求很高。使用人口普查数据和HD患病率的估计，我们确定我们为约20%的HD患者提供服务。大多数HD患者接受精神症状的药物治疗，超过一半的患者接受舞蹈病治疗。大约25%的新HD诊断是针对没有HD家族史的患者。最后，在风险个体预测性检测的需求显着增加后，新闻稿报道成功完成的Ionis-HTTRx（RG 6042）trial.Conclusions：本报告表明高需求的多学科护理HD家庭，支持其价值，提供了一个快照的组织和功能的一个中心。此外，它还展示了与研究进展相关的新闻传播如何影响临床行为。报告来自其他HD中心的类似信息将为我们提供多个地理区域的HD护理状态的更全面的视图。
Background: Clinical care for Huntington's disease (HD) is often provided in experienced centers that provide multidisciplinary care. However, the value of these centers and their uptake by HD families remain unknown.Objective: To describe the services provided by a new HD center, including estimates of capture of the population served.Methods: Retrospective review of a HD Center launched in 2015, including quantitative and qualitative data on clinic visits, demographic and clinical data.Results: We observed a rapid and ongoing growth on the annual number of clinic encounters, with high demand for in-clinic multidisciplinary care. Using census data and estimates of HD prevalence, we determined that we served about 20% of local patients with HD. Most HD patients received pharmacological treatment for psychiatric symptoms, and over half were treated for chorea. About 25% of new HD diagnoses were on patients without family history of HD. Finally, the demand for predictive testing in at risk individuals significantly increased following the press release reporting the successful completion of the Ionis-HTTRx (RG 6042) trial.Conclusions: This report indicates a high demand for multidisciplinary care by HD families, supporting its value, providing a snapshot of the organization and function of a single center. Furthermore, it demonstrates how dissemination of news related to research advances influence clinical behavior. Reporting similar information from other HD centers to would provide us with a more global view of the status of HD care across multiple geographical areas.