Project ECHO for patients with chronic intestinal failure: Empowering people living with rare disease using a virtual telelearning model

Background: Chronic intestinal failure is a devastating rare disease in which patients require complex and life-saving parenteral nutrition or intravenous fluids delivered through a central venous catheter. There is a shortage of clinical expertise to manage chronic intestinal failure and patients in the United States lack access to the limited number of expert care centers. We developed a patient intestinal failure (PIF) ECHO intervention with patient advocates who have lived experience with the goal of connecting patients and family caregivers virtually to multidisciplinary intestinal failure experts for best practice learning. Objective: We pilot-tested the acceptability and feasibility of a direct-to-patient telelearning program based on the well-established ECHO Model focused on best practices in chronic intestinal failure care. Setting and Participants: 19 adults with chronic intestinal failure attended the pilot PIF-ECHO program for 12 consecutive weeks via Zoom between April and July 2026. All participants completed the post intervention questionnaire and 16 individuals participated in 3 focus groups. Design: A mixed methods evaluation was conducted. Questionnaires were assessed according to seven domains of the Theoretical Framework of Acceptability and qualitative data from the virtual focus groups were coded and analyzed using iterative thematic analysis. A data-derived PIF-ECHO logic model was developed to illustrate pathways between the program content and anticipated outcomes. Results: There was strong or very strong agreement that sessions were accessible, enjoyable, worth the time spent, and improved understanding of intestinal failure and its management. Information learned increased confidence for self-advocacy in navigating healthcare needs, disease and therapy self-management, and improved well-being. Interaction with facilitators, expert presenters, and peers was positive, judgement free, validating, and respectful. Participants felt empowered and reported lower levels of emotional strain due to the supportive resources and knowledge gained. Conclusions: A patient-facing tele-learning program in chronic intestinal failure is feasible, accessible, and acceptable to patients and appears to result in important short-term and medium-term benefits. The program was perceived as valuable and notably different from patient and peer-led support groups. The model could be applied more widely to other rare diseases. Lived Experience and Patient Contributions: Four patient advocates with lived experience in chronic intestinal failure were involved throughout the study including pre-study interviews and focus groups to inform PIF-ECHO design and content, recruitment, as presenters on topics of self-advocacy and role of patient support groups, and in the analysis and refinement of the program logic model. Their input shaped the relevance and acceptability of the PIF-ECHO pilot program. All four patient advocates fulfil uniform requirements for authorship and are co-authors on this paper. This work documents a meaningful partnership in the creation of a patient-facing virtual tele-learning adaptation of the ECHO model and establishes a valuable collaboration for future study of PIF-ECHO on a larger scale.