Knowledge of chronic intestinal failure among US gastroenterologists: Cause for concern and learning opportunity.

BACKGROUND: Chronic intestinal failure (CIF) is an ultrarare disease, with an estimated national prevalence of ∼25,000 cases. There is a suspicion of widespread lack of expertise in CIF care, but no formal assessment tool or data exist. We developed and validated a knowledge test in CIF and now report our preliminary results from testing CIF knowledge in a cohort of US gastroenterologists. METHOD: We developed a 20-question knowledge test in CIF, covering four key components of IF. After internal testing, refinement, and revision, we administered the test to a convenience sample of experts and nonexperts in IF. We then deployed the validated test to a cohort of 100 US gastroenterologists. RESULTS: The test had a Cronbach alpha of 0.74, suggesting a reliable test, with a threshold score to discriminate experts and nonexperts of 13.4 (maximum 20) and with a sensitivity of 81.3% and specificity of 86.4%. The overall mean score of 8.2 for the 100 US gastroenterologists was at the level of nonexperts in our convenience sample. CONCLUSION: The preliminary results of our validated knowledge test in IF among a broad group of US gastroenterologists demonstrate lack of knowledge in IF.

Disseminating Knowledge in Intestinal Failure: Initial Report of the Learn Intestinal Failure Tele-ECHO (LIFT-ECHO) Project.

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.