Abstract
There is little data on the experience of managing pediatric Intestinal Failure (IF) in Latin America. This study aimed to identify and describe the current organization and practices of the IF teams in Latin America and the Caribbean. An online survey was sent to inquire about the existence of IF teams that managed children on home parenteral nutrition (HPN). Our questionnaire was based on a previously published European study with a similar goal. Twenty-four centers with pediatric IF teams in eight countries completed the survey, representing a total number of 316 children on HPN. The median number of children on parenteral nutrition (PN) at home per team was 5.5 (range 1–50). Teams consisted of the following members: pediatric gastroenterologist and a pediatric surgeon in all teams, dietician (95.8%), nurse (91.7%), social worker (79.2%), pharmacist (70.8%), oral therapist (62.5%), psychologist (58.3%), and physiotherapist (45.8%). The majority of the centers followed international standards of care on vascular access, parenteral and enteral nutrition, and IF medical and surgical management, but a significant percentage reported inability to monitor micronutrients, like vitamins A (37.5%), E (41.7%), B1 (66.7%), B2 (62.5%), B6 (62.5%), active B12 (58.3%); and trace elements—including zinc (29.2%), aluminum (75%), copper (37.5%), chromium (58.3%), selenium (58.3%), and manganese (58.3%). Conclusion: There is wide variation in how IF teams are structured in Latin America—while many countries have well-established Intestinal rehabilitation programs, a few do not follow international standards. Many countries did not report having an IF team managing pediatric patients on HPN.
Highlights
The cornerstone for the treatment of children with intestinal failure (IF) is specialized and individualized nutritional management, including a fine balance between parenteral nutrition (PN) and enteral nutrition (EN), with the ultimate goal to promote intestinal adaptation and enteral autonomy
These team members, recognized as an important part of an Intestinal rehabilitation program (IRP), are not among the minimum team recommended by NASPGHAN [2], but are mentioned by ESPGHAN/ESPEN guidelines on pediatric PN as part of the multidisciplinary nutrition support team [4,7,8]
Our reported practices on regular monitoring of bone health and micronutrient status are far from desirable and the practices reported in Europe and North America: we reported an inability to monitor vitamins (A, E, B1, B2, B6, and B12) and micronutrients that are knowingly important in the context of Intestinal Failure (IF)
Summary
The cornerstone for the treatment of children with intestinal failure (IF) is specialized and individualized nutritional management, including a fine balance between parenteral nutrition (PN) and enteral nutrition (EN), with the ultimate goal to promote intestinal adaptation and enteral autonomy. Intestinal rehabilitation (IR) is typically a long process in which different phases of nutritional management can be recognized. There is extensive evidence to endorse the recommendation that children with IF are best managed by an Intestinal rehabilitation program (IRP) [2], as delivery of care by these programs has been associated with significantly reduced morbidity and mortality in this chronic complex condition [3]. In 2017, the Nutrition Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) released a Society paper highlighting the importance of IRP in the management of IF and Short Bowel Syndrome (SBS), summarizing the IRP experience of numerous programs, networks, and consortiums [2]
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