Bull Michael T, Darwin Kristin, Venkataraman Vinayak, Wagner Joseph, Beck Christopher A, Dorsey E Ray, Biglan Kevin M
Department of Neurology, University of Rochester, Rochester, NY, USA.
Johns Hopkins University School of Medicine, University of Rochester, Rochester, NY, USA.
J Huntingtons Dis. 2014;3(2):189-95. doi: 10.3233/JHD-140102.
Virtual visits through web-based video conferencing can increase access to specialty care for individuals with Huntington disease (HD) and facilitate research participation.
To determine the feasibility of conducting virtual visits directly into the homes of individuals with HD, to assess the reliability of conducting remote versus in-person motor assessments, and to determine the test-retest reliability of conducting motor assessments remotely.
Individuals with mild to moderate HD underwent baseline in-person clinic assessments and completed a HD care survey. Participants were randomized to receive three virtual visits from one of two physicians over four months that included a modified Unified Huntington's Disease Rating Scale motor examination (excluding rigidity and balance assessments) via web-based video conferencing. Intraclass coefficients (ICC) were calculated to determine the level of agreement between remote and in-person assessments. Participants also completed a survey on their interest in telemedicine.
Thirteen individuals underwent baseline assessments, eleven (85%) participants completed at least one virtual visit, and 27 (82%) of 33 total virtual visits were completed. Remote motor scores demonstrated good reliability (ICC = 0.78; n = 11) compared to in-person motor scores. Test-retest reliability of motor scores conducted remotely was excellent (ICC = 0.90; n = 11). Participants expressed moderate future interest in using virtual visits to participate in research and to receive care.
In this pilot study, virtual visits into the home were feasible and reliable for conducting motor assessments in HD. Larger scale studies need to confirm and generalize these findings to a broader population of participants.
通过基于网络的视频会议进行虚拟问诊,可以增加亨廷顿舞蹈症(HD)患者获得专科护理的机会,并促进其参与研究。
确定直接到HD患者家中进行虚拟问诊的可行性,评估进行远程与面对面运动评估的可靠性,以及确定远程进行运动评估的重测信度。
轻度至中度HD患者接受了基线面对面诊所评估,并完成了一份HD护理调查问卷。参与者被随机分配,在四个月内接受来自两名医生之一的三次虚拟问诊,其中包括通过基于网络的视频会议进行的改良统一亨廷顿舞蹈症评定量表运动检查(不包括僵硬和平衡评估)。计算组内相关系数(ICC)以确定远程评估与面对面评估之间的一致性水平。参与者还完成了一项关于他们对远程医疗兴趣的调查。
13名个体接受了基线评估,11名(85%)参与者完成了至少一次虚拟问诊,33次总虚拟问诊中有27次(82%)完成。与面对面运动评分相比,远程运动评分显示出良好的可靠性(ICC = 0.78;n = 11)。远程进行的运动评分的重测信度极佳(ICC = 0.90;n = 11)。参与者对未来使用虚拟问诊参与研究和接受护理表达了适度的兴趣。
在这项试点研究中,到家中进行虚拟问诊对于HD患者进行运动评估是可行且可靠的。需要更大规模的研究来证实这些发现并将其推广到更广泛的参与者群体。