Improving Outcomes in Chronic Intestinal Failure Using the ECHO Model: The LIFT-ECHO Last Mile Project

慢性肠衰竭（CIF）是一种毁灭性的条件，其中个人无法进食， 喝足够的水来满足基本的生存需求。CIF患者依赖胃肠外 通过泵经留置中心静脉导管静脉内输送营养（PN）。 虽然PN可以挽救生命，但危及生命的并发症可能导致相当大的发病率，损害 生活质量（QOL），并具有显著的死亡风险。CIF患者的护理非常复杂 最好由从事肠道康复的经验丰富的多学科团队提供 程序（IRP）。我们最近的工作表明，美国人严重缺乏CIF方面的专业知识。 胃肠病学家和美国一半以上的州没有IRP。这种缺乏广泛 现有的专业知识导致CIF患者的医疗保健差异显著。我们最近 工作表明，利用技术通过LIFT-ECHO传播知识 基于完善的ECHO模型的项目可以填补CIF护理的关键空白。 应用LIFT-ECHO改善CIF患者护理需要系统的 传播和评估方法，让多个关键利益攸关方参与。我们将测试 假设CIF患者的临床结局将通过提供虚拟的多- D通过在线学习模式LIFT-ECHO项目向非专家医生提供支持。 通过利益相关者的深入参与，我们可以传播和建立LIFT-ECHO， 改善全国CIF的临床结果。 目的1：开发和验证肠衰竭疾病活动指数（IF-DAI）， CIF患者的当前临床状态，对短期和中期变化敏感。 目的2：证明改善的临床结局和CIF/PN特定患者报告质量 通过向医生提供虚拟多学科支持， 通过电梯回波。 目标3：（a）我们将在其评估中对LIFT-ECHO进行实用的形成过程评估。 当前状态(b)在全国范围内传播LIFT-ECHO的过程评估结果， 评估传播效果。 我们的研究是ECHO Model™首次应用于像CIF这样的罕见疾病-我们的 传播战略将提供一个全面的评价框架和工具包 用于评估ECHO™在罕见疾病背景下的实施情况。 我们的应用程序针对SEN：NOT-HS-21-014开发和实施LIFT-ECHO， 解决慢性病患者在获得专家护理方面的差距。

Chronic intestinal failure (CIF) is a devastating condition where individuals are unable to eat and drink enough to meet basic survival needs. Patients with CIF are dependent on parenteral nutrition (PN) delivered intravenously by a pump via an indwelling central venous catheter. While PN is lifesaving, life-threatening complications can cause considerable morbidity, impair quality of life (QOL) and carry significant mortality risk. Care of patients with CIF is very complex and best delivered by experienced multi-disciplinary teams working in intestinal rehabilitation programs (IRP). Our recent work has shown a critical lack of expertise in CIF among US gastroenterologists and over half the states in the US do not have IRP. This lack of widely available expertise results in significant healthcare disparities for patients with CIF. Our recent work has shown that use of technology to disseminate knowledge through the LIFT-ECHO Project, based on the well-established ECHO Model can fill a critical gap in CIF care. Application of LIFT-ECHO to improve CIF patient care requires a systematic dissemination and evaluation approach, engaging multiple key stakeholders. We will test the hypothesis that clinical outcomes in patients with CIF will improve by providing virtual multi- D support to non-expert physicians through an online learning model, the LIFT-ECHO Project. Through intensive stakeholder engagement, we can disseminate and establish LIFT-ECHO to improve clinical outcomes in CIF nationally. AIM 1: To develop and validate an intestinal failure disease activity index (IF-DAI) that assesses current clinical status in CIF patients and is sensitive to short-term and medium-term changes. AIM 2: To demonstrate improved clinical outcomes and CIF/PN specific patient-reported quality of life (PRQOL) in CIF patients by providing virtual multi-disciplinary support to their physicians through LIFT-ECHO. AIM 3: (a) We will undertake a pragmatic formative process evaluation of LIFT-ECHO in its current state. (b) To disseminate process evaluation results of LIFT-ECHO nationally and evaluate dissemination effectiveness. Our study is the first application of the ECHO Model™ to a rare disease like CIF – our dissemination strategy will provide a comprehensive evaluation framework and a toolkit for assessment of ECHO™ implementation in the context of a rare disease. Our application targets the SEN: NOT-HS-21-014 to develop and implement LIFT-ECHO to address the disparities in access to expert care for patients with a chronic disease.