1 KU Center for Telemedicine & Telehealth & Department of Pediatrics, University of Kansas Medical Center, Fairway, Kansas, USA.
2 School of Nursing, University of Kansas Medical Center, Kansas City, Kansas, USA.
Nutr Clin Pract. 2017 Dec;32(6):789-798. doi: 10.1177/0884533617735527. Epub 2017 Oct 10.
Patients receiving home parenteral nutrition (HPN), a life-sustaining intravenous (IV) infusion that provides nourishment and hydration to patients with short gut or inflammatory bowel diseases, are often isolated and not in visual contact with peers or health providers. One completed clinical trial (Clinical Trials.gov NCT0190028) and 1 ongoing clinical trial (Clinical Trials.gov NCT02987569) are evaluating a mobile videoconferencing-delivered support group intervention for patients on HPN and their caregivers. This home-based telemedicine intervention uses encrypted tablet-based videoconferencing to connect multiple families in real time. The twice-daily IV regimen is challenging for patients who may experience infusion catheter-related bloodstream infections, difficulties with fatigue, loss of sleep, depressive disorders, and worry over the potential life-threatening side effects and the expenses of this therapy. Using secure telemedicine, the facilitated support group intervention aims to enhance HPN home care, daily functioning, and quality of life. The authors provide the rationale for the telemedicine approach with HPN users and caregivers. They provide "how-to" information about the content and process of the facilitated support group sessions via secure videoconferencing. They share lessons learned from the ongoing evaluation of the telemedicine approach.
接受家庭肠外营养(HPN)治疗的患者通常会被隔离,无法与同龄人或医疗保健提供者进行视觉接触,HPN 是一种维持生命的静脉(IV)输注,为短肠或炎症性肠病患者提供营养和水分。一项已完成的临床试验(ClinicalTrials.gov NCT0190028)和一项正在进行的临床试验(ClinicalTrials.gov NCT02987569)正在评估一种用于 HPN 患者及其护理人员的移动视频会议支持小组干预措施。这种基于家庭的远程医疗干预措施使用加密的基于平板电脑的视频会议实时连接多个家庭。对于可能经历输注导管相关血流感染、疲劳、睡眠不足、抑郁障碍以及担心潜在危及生命的副作用和治疗费用的患者来说,每日两次的 IV 治疗方案具有挑战性。使用安全的远程医疗,促进支持小组干预旨在增强 HPN 家庭护理、日常功能和生活质量。作者提供了使用 HPN 用户和护理人员进行远程医疗的基本原理。他们通过安全的视频会议提供了关于促进支持小组会议内容和过程的“操作方法”信息。他们分享了从远程医疗方法的正在进行的评估中吸取的经验教训。