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韩国肌萎缩侧索硬化症居家患者的远程医疗体验

Telemedicine Experiences of People Living with Amyotrophic Lateral Sclerosis at Home in South Korea.

作者信息

Kim Min Sun, Yoo Shin Hye, Kim Kyae Hyung, Cho Belong, Lee Sun Young

机构信息

Department of Pediatrics, Seoul National University College of Medicine & Hospital, Seoul, Korea.

Center for Palliative Care and Clinical Ethics, Seoul National University Hospital, Seoul, Korea.

出版信息

Yonsei Med J. 2025 Jun;66(6):366-373. doi: 10.3349/ymj.2024.0145.

Abstract

PURPOSE

Telemedicine is advantageous in providing medical care to patients with mobility difficulties. This single-center study aimed to report on the provision of video televisits to people living with amyotrophic lateral sclerosis (pALS, ALS) who were registered with a home-based medical care (HBMC) team in a tertiary hospital in South Korea.

MATERIALS AND METHODS

A retrospective cross-sectional study was conducted for pALS provided with video televisits by the HBMC team between July 2020 and February 2023. The patients' demographics, disease status, mobility level, and supportive care equipment were investigated. The main issues discussed at televisits were investigated.

RESULTS

During the 32-month study period, video televisits were provided to 69 (81.2%) of the 85 pALS registered with the HBMC team. Their median (interquartile range) age was 66 (57-71) years, and 66.7% were aged 60 years or older. At the time of the televisits, 71.0% were non-ambulatory and 27.5% were at an assisted ambulatory level. Furthermore, 82.6% were receiving nutritional support with a nasogastric or gastrostomy tube, and 78.3% had received either non-invasive positive pressure ventilation (43.5%) or tracheostomy invasive ventilation (34.8%). Common issues addressed on televisits were disease-related symptoms (100%), management of supportive care equipment (92.8%), acute health issues (52.2%), and advance care planning (ACP) including goal of care discussion (14.5%).

CONCLUSION

Video telemedicine is feasible for pALS, including older adults with limited mobility due to muscle weakness or reliance on various supportive care equipment. Video televisits allow for a variety of discussions, ranging from acute health issues to ACP.

摘要

目的

远程医疗在为行动不便的患者提供医疗服务方面具有优势。这项单中心研究旨在报告为在韩国一家三级医院注册的家庭医疗护理(HBMC)团队的肌萎缩侧索硬化症患者(pALS,ALS)提供视频远程会诊的情况。

材料与方法

对2020年7月至2023年2月期间由HBMC团队为pALS提供视频远程会诊的情况进行了回顾性横断面研究。调查了患者的人口统计学特征、疾病状况、行动能力水平和支持性护理设备。对远程会诊中讨论的主要问题进行了调查。

结果

在32个月的研究期间,为在HBMC团队注册的85例pALS中的69例(81.2%)提供了视频远程会诊。他们的年龄中位数(四分位间距)为66(57 - 71)岁,66.7%的患者年龄在60岁及以上。在进行远程会诊时,71.0%的患者无法行走,27.5%的患者处于辅助行走水平。此外,82.6%的患者通过鼻饲管或胃造瘘管接受营养支持,78.3%的患者接受了无创正压通气(43.5%)或气管切开有创通气(34.8%)。远程会诊中讨论的常见问题包括与疾病相关的症状(100%)、支持性护理设备的管理(92.8%)、急性健康问题(52.2%)以及包括护理目标讨论在内的预先护理计划(ACP)(14.5%)。

结论

视频远程医疗对pALS患者是可行的,包括因肌肉无力或依赖各种支持性护理设备而行动不便的老年人。视频远程会诊允许进行从急性健康问题到ACP等各种讨论。

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Experience with telemedicine in a multi-disciplinary ALS clinic.多学科肌萎缩侧索硬化症诊所的远程医疗经验。
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