Background: Intestinal failure (IF) is defined as an ultrarare disease, with an estimated prevalence of ∼25,000 cases in the US. There is a suspicion of disparities in outcomes in IF care, likely related to widespread lack of expertise. The Extension for Community Healthcare Outcomes (ECHO) model originally described by Dr Sanjeev Arora has been used to disseminate knowledge and best practices in many chronic diseases to improve outcomes. We examined our initial experience with using the ECHO model to disseminate learning in IF. Method: This is a retrospective review of the launch, growth, and geographic reach of the Learn Intestinal Failure TeleECHO (LIFT-ECHO) program using prospectively collected data. Results: The LIFT-ECHO program has achieved significant geographic reach and clinician engagement. The program has reached close to two-thirds of the states in the US and several countries outside. Clinician engagement in the learning program appears to be growing exponentially. Conclusion: It is feasible to use the ECHO model to disseminate knowledge in managing a rare disease like IF while maintaining fidelity to the proven model. Studies are underway to demonstrate direct benefit to patients.
- Extension for Community Healthcare Outcomes
- intestinal failure
- parenteral nutrition