The COVID-19 pandemic rapidly changed genetic counseling services across the United States. At the University of Pennsylvania (UPenn), a large academic hospital in an urban setting, nearly all genetic counseling (GC) visits for adult–onset disorders within the Department of Neurology were conducted via secure videoconferencing (telegenetics) or telephone between March and December 2020. Although telemedicine services have been steadily emerging, many clinical programs, including the neurogenetics program at UPenn, had not built infrastructure or widely utilized these services prior to the pandemic. Thus, little is known about patient attitudes toward receiving clinical GC services remotely. From May 18 to October 18, 2020, all individuals seen remotely for GC in adult neurology via telephone or telegenetics were surveyed about their satisfaction with telehealth GC (N = 142), with a response rate of 42% (N = 60/142). Telephone and telegenetics services were referred to as ‘telehealth’ in the surveys to capture patient perspectives on all remote GC services, though the majority (N = 49/60) of these visits were completed via telegenetics. Surveys included the modified telehealth usability questionnaire (MTUQ), genetic counseling satisfaction scale (GCSS), and novel questions about future telehealth use. Preliminary results suggest that patients were satisfied with receiving remote GC services in adult neurology, with most participants strongly agreeing to all items about satisfaction with telehealth. Just 2% of participants preferred only in-person visits in the future, but every participant was willing to consider using telehealth for future visits if their genetic counselor felt it was appropriate. Most participants preferred a hybrid model (73%), and some (25%) preferred only telehealth for future visits. Additionally, we found no differences in satisfaction with remote services based on visit type (initial vs. results disclosure) nor age. We conclude that remote GC is an acceptable method for the provision of services in adult neurology that is well-received by patients.

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在 COVID-19 时代过渡到远程遗传学：患者对成人神经病学远程遗传咨询的满意度

COVID-19 大流行迅速改变了美国的遗传咨询服务。在宾夕法尼亚大学 (UPenn) 是一家位于城市环境中的大型学术医院，几乎所有神经内科内成人发病的遗传咨询 (GC) 访问都是通过安全视频会议（远程遗传学）或电话在 3 月至 12 月期间进行的2020. 尽管远程医疗服务不断涌现，但许多临床项目，包括宾夕法尼亚大学的神经遗传学项目，在大流行之前尚未建立基础设施或广泛使用这些服务。因此，关于患者对远程接受临床 GC 服务的态度知之甚少。2020年5月18日至10月18日，N  = 142)，响应率为 42% ( N  = 60/142)。电话和远程遗传学服务在调查中被称为“远程医疗”，以获取患者对所有远程 GC 服务的看法，尽管大多数 ( N = 49/60) 这些访问是通过远程遗传学完成的。调查包括修改后的远程医疗可用性问卷 (MTUQ)、遗传咨询满意度量表 (GCSS) 以及有关未来远程医疗使用的新问题。初步结果表明，患者对接受成人神经内科远程 GC 服务感到满意，大多数参与者强烈同意有关远程医疗满意度的所有项目。只有 2% 的参与者更喜欢在未来只进行面对面的访问，但如果他们的遗传顾问认为合适的话，每个参与者都愿意考虑使用远程医疗进行未来的访问。大多数参与者更喜欢混合模式 (73%)，一些 (25%) 只喜欢远程医疗以备将来访问。此外，我们发现基于访问类型（初始与非访问）的远程服务满意度没有差异。结果披露）或年龄。我们得出的结论是，远程 GC 是一种可接受的成人神经病学服务方法，深受患者欢迎。