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

慢性肠衰竭（CIF）是一种毁灭性的疾病，患者无法进食和排泄

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.