Patient perspectives on barriers to care and the perceived value of a direct-to-patient virtual learning program for chronic intestinal failure

Background: There is a shortage of clinical expertise in chronic intestinal failure (CIF). We aimed to explore patient perspectives on the need for an evidence-based virtual tele-learning program to train patients in best practice CIF care using the ECHO™ Model. Findings were used to inform development of the Patient Intestinal Failure-ECHO (PIF-ECHO) Project.Material and Methods: Using a qualitative research design, this study included interviews with six CIF patient advocates and two virtual focus groups with nine individuals living with CIF who expressed interest in PIF-ECHO. Data were coded and analyzed using iterative thematic analysis to generate themes focused on perceived need for and value of PIF-ECHO. Results: Four main themes were identified: 1) lack of provider access and support for patients living with CIF, 2) high levels of patient responsibility for disease management, self-advocacy, and system navigation, 3) limited access to patient-facing information on best practice CIF care, and, 4) severe emotional strain. Perceived value of PIF-ECHO centered on the program's potential to improve knowledge and access to resources, which participants hypothesized would lead to improved capacity for disease self-management, and ability to advocate for their needs across healthcare settings. Findings informed the development of a PIF-ECHO logic model illustrating connections between program activities and anticipated outcomes. Conclusion: A patient-facing ECHO program for CIF has the potential to address patient-identified needs related to access to specialist expertise and patient education, ultimately improving CIF patients' ability to manage their own care and advocate for their needs across systems.