Patient Intestinal Failure-ECHO Project (PIF-ECHO)

Chronic intestinal failure is a severe condition that prevents patients from absorbing essential nutrients and fluids, requiring long-term parenteral nutrition (PN) (a method that provides nutrition intravenously) for sustenance. While PN is lifesaving, it is associated with risks of serious complications such as sepsis and liver disease—issues that often result in frequent hospitalizations and elevated mortality rates. The complexity of CIF makes multi-D care crucial; however, over half of the states in the United States lack access to specialized intestinal rehabilitation centers. This gap creates substantial healthcare access issues, particularly in rural areas, forcing patients to travel long distances for expert care and incur additional costs.

Research shows that non-specialist clinicians, especially in underserved regions, often lack sufficient knowledge of complex, rare conditions such as CIF. The ECHO Model was initially designed to bridge this gap by connecting specialists with generalists, fostering mentorship and knowledge-sharing to improve care quality for rare diseases. This study will adapt the ECHO Model for patient use through the Patient Intestinal Failure-ECHO Project (PIF-ECHO), by enabling CIF patients, who often possess substantial expertise in managing their own care, and their family caregivers to directly access virtual mentoring and case-based education.

The specific aims of the research are as follows:

• Demonstrate that the ECHO Model can be successfully adapted to allow patients with CIF and their family caregivers direct access to case-based education and tele-mentoring though a virtual multi-D team.
• Demonstrate safety, acceptability, and value of the PIF-ECHO Model for patients with rare diseases such as CIF, using a pilot evaluation framework.
• Evaluate effectiveness of PIF-ECHO and disseminate results widely.

To evaluate the feasibility of applying PIF-ECHO to address the nationwide shortage of expertise in CIF, the researchers will systematically assess the program’s practicality, effectiveness, and scalability across various key areas, using a multi-phased, mixed-methods approach. The study will recruit CIF patients through national support organizations and conduct a pilot intervention, evaluating the program’s impact on safety, patient engagement, and self-care through patient surveys, focus groups, and expert reviews. The findings will be shared with patient organizations and disseminated through peer-reviewed publications, guided by input from CIF experts and patient advocates.

This study aims to enhance knowledge and self-care confidence among CIF patients and family caregivers by allowing direct access to a team of experts to foster peer learning through the ECHO Model. By integrating the sharing of clinical best practices and patients’ lived experiences, this innovative method not only has the potential to improve patient outcomes, but also establishes a scalable framework for applying the ECHO Model to patients with other rare diseases. This study has the potential to set a new precedent for how patient and caregiver engagement is integrated into healthcare, expanding the possibilities for similar care models to be used with other rare and complex diseases.