International Latin American Survey on Pediatric Intestinal Failure Team

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.

Characteristics of adult intestinal failure centers: An international multicenter survey

“…The most common disciplines in those studies were gastroenterologist (100%), dietitian (95% and 96%), and nurse (92%). However, a pediatric surgeon was commonly reported in pediatric IF centers in Europe (89%) and South America (100%) 16,17 . Although some disciplines are not by listed by CIF centers studied, it does not mean that expertise is lacking, and these may be sought through specific and targeted consultation within a center.…”

From intestinal failure to transplantation: Review on the current need for transplant indications under multidisciplinary transplant programs worldwide

“…Emerging economic countries have limited access to specialized intestinal rehabilitation programs. 95 In several countries, home parenteral nutrition is not an option. 96 Medications such as teduglutide may not be supported by various health systems due to the high cost.…”

“…Internationally, there remain significant equity concerns in access to both intestinal rehabilitation and transplant. Emerging economic countries have limited access to specialized intestinal rehabilitation programs 95 . In several countries, home parenteral nutrition is not an option 96 .…”

Pediatric intestinal rehabilitation

“…Recently, IRP activities have been extended to the neonatal ICU [9]. In addition, IRP enforcement has been reported not only in Europe and North America but also in Latin America and East Asia [10,11]. As a result, the scope and the regions for IRP activities have expanded.…”