Providing predictive testing for Huntington disease via telehealth: results of a pilot study in British Columbia, Canada
Providing predictive testing for Huntington disease via telehealth: results of a pilot study in British Columbia, Canada
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DOI：
10.1111/cge.12033
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发表时间：
2013-07-01
影响因子：
3.5
通讯作者：
Hayden, M. R.
中科院分区：
文献类型：
--
作者：
Hawkins, A. K.;Creighton, S.;Hayden, M. R.
亨廷顿病（HD）的预测检测（PT）通常需要多次亲自预约，这对来自偏远地区的人来说是一个障碍。这项试点研究报告了远程医疗PT的使用，以检查这种远程医疗测试是否在保持护理和支持质量的同时改善了HD PT的获取。个体通过远程医疗协议或标准的面对面协议接受PT，并被要求完成有关其体验的调查。结果显示，在护理、信息、咨询和支持的质量方面，现场测试组和远程健康测试组之间没有显著差异。两组中的大多数参与者都表示，测试前咨询为他们提供了关于进行测试的利弊的充分知识，提出问题的机会，以及做出明智决定的能力。两组的大多数参与者都对结果的传递方式感到满意，并表示他们已经收到了关于这些结果的含义的足够信息。这项研究表明，远程医疗PT改善访问，同时保持护理和支持的质量。
Predictive testing (PT) for Huntington disease (HD) usually requires several in-person appointments which acts as a barrier to testing for those from remote regions. This pilot study reports the use of telehealth PT to examine whether such telehealth testing improves access to HD PT while maintaining quality of care and support. Individuals underwent PT via the telehealth protocol or standard in-person protocol and were asked to complete surveys regarding their experience. Results reveal no significant differences between the in-person-tested and telehealth-tested groups with respect to quality of care, information, counselling and support. The majority of participants in both groups stated that pre-test counselling had provided them with sufficient knowledge about the advantages and disadvantages of undergoing testing, the opportunity to ask questions, and the ability to make an informed decision. The majority of participants in both groups were satisfied by the manner in which results were delivered and stated they had received sufficient information regarding the implications of these results. This study reveals that telehealth PT improves access while maintaining quality of care and support.