Characteristics of adult intestinal failure centers: An international multicenter survey

• Published in: Nutrition in clinical practice 2023-06, Vol.38 (3), p.657-663
• Main Authors: Lakananurak, Narisorn, Moccia, Lisa, Wall, Elizabeth, Herlitz, Jean, Catron, Hilary, Lozano, Edward, Delgado, Adela, Vanuytsel, Tim, Mercer, David, Pevny, Sophie, Berner‐Hansen, Mark, Gramlich, Leah
• Format: Article
• Language: English
• Subjects: Adult; Chronic Disease; home nutrition support; Humans; Intestinal Diseases - therapy; Intestinal Failure; Nutritionists; patient care team; Short Bowel Syndrome; survey; Surveys and Questionnaires
• ISSN: 0884-5336; 1941-2452
• DOI: 10.1002/ncp.10926

Background Current guidelines recommend that patients with chronic intestinal failure (CIF) should be managed by a multidisciplinary team (MDT). However, the characteristics of real‐world IF centers and the patients they care for are lacking. The study aims to describe IF center characteristics as well as characteristics of patients with CIF across different global regions. Methods This is an international multicenter study of adult IF centers using a survey. The questionnaire survey included questions regarding program and patient characteristics. Thirty‐three investigational centers were invited to participate. Each center was asked to answer the survey questions as one MDT. Results The survey center response rate was 91%. The median number of patients with CIF per center was 128 (range, 30–380). The most common disciplines reported were gastroenterologist (93%), dietitian (90%), nurse (83%), and advanced practitioner (nurse practitioner and physician assistant, 77%). There were centers that did not have a pharmacist, surgeon, psychologist, and social worker (30%, 37%, 60%, and 70%, respectively). The median full‐time equivalents (FTEs) per 100 patients were 1.1 for nurses, 1 for dietitians, 1 for advanced practitioners, and 0.9 for gastroenterologists. Short bowel syndrome was the most common cause of CIF (50%) followed by intestinal dysmotility (20%). Conclusion The majority of centers were managing around 100 patients with CIF. Despite the widespread use of the MDT, there are some variances in team characteristics. Gastroenterologists were the most common physicians supporting MDTs. In IF centers, one FTE of each core discipline was supported to manage 100 patients with CIF.