Geronimo Andrew, Wright Courtney, Morris Anne, Walsh Susan, Snyder Bethany, Simmons Zachary
a Department of Neurosurgery , and.
b Neurology , Penn State College of Medicine , Hershey , PA , USA , and.
Amyotroph Lateral Scler Frontotemporal Degener. 2017 Nov;18(7-8):555-561. doi: 10.1080/21678421.2017.1338298. Epub 2017 Jul 5.
The practice of telehealth in the care of patients with ALS has received little attention, but has the potential to change the multidisciplinary care model. This study was carried out to assess the feasibility and acceptability of telehealth for ALS care via real-time videoconferencing from the clinic to patients' homes.
Patients and caregivers engaged in live telehealth videoconferencing from their homes with members of a multidisciplinary ALS care team who were located in an ALS clinic, in place of their usual in-person visit to the clinic. Participating patients, their caregivers, and health care providers (HCPs) completed surveys assessing satisfaction with the visit, quality of care, and confidence with the interface. Mixed methods analysis was used for survey responses.
Surveys from 11 patients, 12 caregivers, and 15 HCPs were completed. All patients and caregivers, and most HCPs, agreed that the system allowed for good communication, description of concerns, and provision of care recommendations. The most common sentiment conveyed by each group was that telehealth removed the burdens of travel, resulting in lower stress and more comfortable interactions. Caregivers and HCPs expressed more concerns than patients about the ways in which telehealth fell short of in-person care.
Telehealth was generally viewed favourably by ALS patients, caregivers, and multidisciplinary team members. Improvements in technology and in methods to provide satisfactory remote care without person-to-person contact should be explored.
远程医疗在肌萎缩侧索硬化症（ALS）患者护理中的应用鲜受关注，但有潜力改变多学科护理模式。本研究旨在评估通过从诊所到患者家中的实时视频会议进行ALS护理远程医疗的可行性和可接受性。
患者和护理人员在家中与位于ALS诊所的多学科ALS护理团队成员进行实时远程医疗视频会议，取代他们通常的门诊就诊。参与的患者、他们的护理人员和医疗服务提供者（HCPs）完成了评估对就诊的满意度、护理质量和对界面的信心的调查。对调查回复采用混合方法分析。
完成了11名患者、12名护理人员和15名HCPs的调查。所有患者和护理人员以及大多数HCPs都认为该系统有助于良好的沟通、问题描述和护理建议的提供。每组表达的最常见观点是远程医疗消除了出行负担，从而减轻了压力，互动更舒适。护理人员和HCPs比患者更担心远程医疗在哪些方面不如面对面护理。
ALS患者、护理人员和多学科团队成员总体上对远程医疗持积极看法。应探索改进技术以及在无需面对面接触的情况下提供令人满意的远程护理的方法。
