Chronic Intestinal Failure and Short Bowel Syndrome in Adults: Principles and Perspectives for the Portuguese Health System.

BACKGROUND

Short bowel syndrome is a devastating malabsorptive condition and the most common cause of chronic intestinal failure (CIF). Patients need parenteral support for months or years. Ideally, it should be delivered at home, reducing limitations in everyday life activities.

SUMMARY

The Portuguese Health Directive 017/2020 was the first step in the regulation of home CIF management, and more patients are now being treated in an ambulatory setting. However, much work still needs to be performed in this area. Our country lacks a network of units capable of providing home parenteral nutrition (HPN), and only a few centers have expertise to take care of these complex patients: fluid support, oral, enteral, and parenteral nutrition; disease/HPN-related complications; pharmacologic treatment; and surgical prevention/treatment. Providing adequate transition from pediatric to adult care is a mandatory issue that should only be addressed by expert centers.

KEY MESSAGES

Implementation of a national network, as well as the creation of an intestinal failure registry, with an initial focus on adult patients, will start a new era in the identification and management of these complex CIF patients.