Kishore R. Iyer

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.

Purpose Short bowel syndrome with intestinal failure (SBS-IF) requires lengthy parenteral support (PS) infusions to maintain nutrition and hydration, and may also involve treatment with glucagon-like peptide 2 (GLP-2) analog injections. SBS-IF and its treatment have significant health-related quality-of-life (HRQoL) impacts on patients. While existing patient-reported outcome (PRO) questionnaires measure HRQoL impacts of SBS, differences in intestinal anatomy or treatment type have their own impacts to patients that warrant assessment. This qualitative research supports the content validity of three new questionnaires to measure these specific impacts on patients with SBS-IF (i.e., questionnaires are measuring what is important in ways that are understandable to patients). Methods Qualitative research activities, including a targeted literature review, meetings with clinical experts, and patient interviews, were conducted to understand the patient experience of SBS-IF and its treatment and to inform the development and evaluation of questionnaires to measure HRQoL impacts related to patients with jejunostomy (‘stoma’); patients with colon-in-continuity and no stoma (‘CIC’); and PS infusions and GLP-2 analog injections for both groups of patients. Results From the publications (n = 26), and meetings with experts (n = 8), three draft questionnaires were constructed for impacts specific to SBS-IF with stoma, impacts specific to SBS-IF with CIC, treatment impacts related to PS infusions and GLP-2 analog injections. Qualitative patient interviews (n = 23) confirmed the questionnaires’ relevance and comprehensibility; minor revisions were subsequently made to the questionnaires based upon participants’ suggestions. Conclusion This research provides content validity evidence for the three questionnaires to measure HRQoL impacts of SBS-IF, PS infusions, and GLP-2 analog injections among patients with SBS-IF.

Background: Rare and nutritionally complex diseases, like chronic intestinal failure (CIF), are not encountered regularly by clinicians. Specialized centers with experience in intestinal failure are relatively sparse, leading many patients to rely on local clinicians. Previously published reports demonstrated lack of knowledge in intestinal failure among gastroenterologists in the United States, in Europe, and in the United Kingdom. This study aims to evaluate intestinal failure knowledge in a cohort of registered dietitians. Methods: A validated, 20‐question survey on CIF knowledge covering four key domains was sent to dietitian members of the American Society for Parenteral and Enteral Nutrition. Descriptive data were collected regarding respondents' clinical practice characteristics. Performance was evaluated, and results were compared between self‐identified experts and nonexperts in CIF and parenteral nutrition. Results: Of 94 respondents, 34% self‐identified as experts in intestinal failure and 53% in parenteral nutrition management. Most self‐identified intestinal failure experts (81.3%) reported managing 11–20 patients with CIF annually, but less than half worked with a multidisciplinary team, and less than one‐quarter practiced in an intestinal rehabilitation program. Overall median score was 13.0 (IQR 11.0–15.0). Self‐identified dietitians reporting expertise in intestinal failure and parenteral nutrition scored 15 (IQR 12–17) and 14 (IQR 12–17), respectively. Conclusion: Regardless of self‐reported level of expertise, dietitian knowledge scores were high for home parenteral nutrition monitoring and complications of CIF. Given the integral role nutrition plays in intestinal failure, dietitians should be involved in the management of patients with CIF.

Background: This study investigated the prevalence, characteristics, and management of patients with chronic intestinal failure (CIF) in the United States in 2012–2020, based on parenteral support (PS) prescription claims and healthcare utilization.Methods: Patients with CIF were identified from the Integrated DataVerse® claims database if they had at least two PS prescriptions within 6 months and a relevant diagnosis. Analysis included prevalence and characteristics of patients with CIF, their travel distance to receive PS prescriptions, and the distribution of PS providers and their prescribing history.Results: Up to 24,048 patients with CIF were identified, equivalent to 75 patients per million. CIF affected people of all ages, being more prevalent in women than in men. Many providers signed PS orders for small patient groups over short time periods, whereas few providers signed PS orders for large patient groups long term, indicating a lack of centralization. The distribution of PS providers suggested a disparity in healthcare coverage in rural vs urban areas, leading to patients traveling considerable distances to receive PS prescriptions. This may be exacerbated by a decline of providers with expertise in CIF and nutrition.Conclusions: Healthcare disparities for patients with CIF have likely been obscured by the lack of CIF‐specific diagnostic and procedure codes, obliging providers to code for their patients under other codes. Effective policy changes, including centralized care, revision of reimbursement models, and expansion of nutrition‐focused education in addition to the newly introduced International Classification of Diseases codes, are needed to provide the best care for patients.