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International Latin American Survey on Pediatric Intestinal Failure Team nutrients Article International Latin American Survey on Pediatric Intestinal Failure Team José Vicente N. Spolidoro 1,2,* , Mirella C. Souza 3, Helena A. S. Goldani 4, María N. Tanzi 5, Veronica B. Busoni 6 , Maria del Carmen Padilla 7, Nelson E. Ramirez 8, Colomba Cofre 9, Lidia P. Valdivieso 10 , Carola Saure 11, Gabriela Jimenez-Arguedas 12, Mikaelle S. M. Mateus 13, Roberta Serra 14, Carlos Cuadros-Mendonza 15, Juan Rivera-Medina 16 , Daniela Gattini 9,17, Beatriz J. dos Santos 18, Clara Plata 19 , and Natascha Silva Sandy 17 on behalf of the LASPGHAN Intestinal Failure Working Group † 1 School of Medicine, Pontificia Universidade Catolica do Rio Grande do Sul, Porto Alegre 90619-900, Brazil 2 Hospital Moinhos de Vento, Porto Alegre 90035-902, Brazil 3 Unidade de Suporte de Home Care, Unimed Blumenau, Ponta Aguda 89051-900, Brazil; [email protected] 4 Pediatric Gastroenterology Unit, Hospital de Clinicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre 90035-903, Brazil; [email protected] 5 Unidad de Nutrición Enteral y Parenteral, Pediatric Gastroenterology and Endoscopy, Centro Hospitalario Pereira Rossell, 11600 Montevideo, Uruguay; [email protected] 6 Pediatric Gastroenterology and Hepatology Unit, Department of Pediatrics, Hospital Italiano de Buenos Aires, Buenos Aires C1199 CABA, Argentina; [email protected] 7 Hospital Materno Infantil Caja Nacional, Santa Cruz, Bolivia; [email protected] 8 Hospital del Seguro Universitário, Universidad Mayor de San Andrés, 3161 La Paz, Bolivia; [email protected] 9 Department of Pediatric Gastroenterology and Nutrition, School of Medicine, Pontificia Universidad Catolica Citation: Spolidoro, J.V.N.; Souza, de Chile, Santiago 8330024, Chile; [email protected] (C.C.); [email protected] (D.G.) 10 M.C.; Goldani, H.A.S.; Tanzi, M.N.; Pediatric Gastroenterology, Hepatology and Nutrition Unit, Department of Pediatrics, Hospital Nacional Docente Madre Niño San Bartolome, Lima 15001, Peru; [email protected] Busoni, V.B.; Padilla, M.d.C.; Ramirez, 11 División de Nutrición y Diabetes, Hospital de Pediatría Juan Pedro Garrahan, N.E.; Cofre, C.; Valdivieso, L.P.; Saure, Buenos Aires C1245 CABA, Argentina; [email protected] C.; et al. International Latin American 12 Servicio de Gastroenterología, Departamento de Pediatría, Hospital Nacional de Niños, “Dr. Carlos Sáenz Survey on Pediatric Intestinal Failure Herrera” Caja Costarricense de Seguro Social, San José 10103, Costa Rica; [email protected] Team. Nutrients 2021, 13, 2754. 13 Hospital Infantil Albert Sabin- Ambulatorio de Reabilitação Intestinal, Fortaleza 60410-994, Brazil; https://doi.org/10.3390/nu13082754 [email protected] 14 Instituto de Puericultura Martagã Gesteira—Universidade Federal do Rio de Janeiro, Academic Editors: Luis A. Moreno, Rio de Janeiro 21941-912, Brazil; [email protected] 15 Mauro Fisberg and Irina Kovalskys Hospital Internacional de Colombia—Fundacion Cardiovascular de Colombia, Santander 681004, Colombia; [email protected] 16 Gastroenterology, Hepatology and Nutrition Unit of Instituto Nacional de Salud del Niño, Universidad Received: 17 June 2021 Nacional Mayor de San Marcos, Lima 15081, Peru; [email protected] Accepted: 12 July 2021 17 Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Hospital for Sick Published: 11 August 2021 Children, University of Toronto, Toronto, ON M5G 1X8, Canada; [email protected] 18 Hospital da Criança Conceição, Porto Alegre 91350-250, Brazil; [email protected] 19 Publisher’s Note: MDPI stays neutral Pontificia Universidad Javeriana, Hospital Universitario San Ignacio, Bogota 111321, Colombia; with regard to jurisdictional claims in [email protected] published maps and institutional affil- * Correspondence: [email protected] or [email protected] † Membership of the Latin American Society for Pediatric Gastroenterology, Hepatology and Nutrition iations. (LASPGHAN) Working Group (Grupo de Trabajo en Investigación-Insuficiencia Intestinal). 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 Copyright: © 2021 by the authors. teams in Latin America and the Caribbean. An online survey was sent to inquire about the existence Licensee MDPI, Basel, Switzerland. of IF teams that managed children on home parenteral nutrition (HPN). Our questionnaire was based This article is an open access article on a previously published European study with a similar goal. Twenty-four centers with pediatric IF distributed under the terms and conditions of the Creative Commons teams in eight countries completed the survey, representing a total number of 316 children on HPN. Attribution (CC BY) license (https:// The median number of children on parenteral nutrition (PN) at home per team was 5.5 (range 1–50). creativecommons.org/licenses/by/ Teams consisted of the following members: pediatric gastroenterologist and a pediatric surgeon in 4.0/). all teams, dietician (95.8%), nurse (91.7%), social worker (79.2%), pharmacist (70.8%), oral therapist Nutrients 2021, 13, 2754. https://doi.org/10.3390/nu13082754 https://www.mdpi.com/journal/nutrients Nutrients 2021, 13, 2754 2 of 18 (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. Keywords: home parenteral nutrition; intestinal failure; intestinal rehabilitation; survey 1. Introduction 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. After an initial acute phase which focuses on metabolic stabilization, the adaptative period starts, and during this phase, many patients are candidates for home parenteral nutrition (HPN) [1]. 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]. For more than three decades, IRPs exist in multiple sites across the globe, especially in North America and Europe, and management of IF by IRPs is considered the current state of the art [2]. In 2017, the Nutrition Committee of the North American Society for Pediatric Gas- troenterology, Hepatology and Nutrition (NASPGHAN) released a Society paper high- lighting 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]. NASPGHAN recommended that at minimum staffing for an IR program should include a gastroenterologist, surgeon, dietitian (or registered dietitian-nutritionist), and a nurse, although the need for close collaboration with neonatologists, and the role for many other specialists and health care professionals (social workers, child psychologists, occupational therapists/physical therapists, speech/feeding therapists, interventional radiologists, and child-life specialists) was also recognized. In that same year, a European study on the organization and clinical practice of teams treating children with IF across Europe revealed a wide diversity of composition of these teams and their number of patients treated [4]. Furthermore, these authors assessed compliance of the IF teams with the most current guideline at the time of their publication provided by the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and the European Society for Clinical Nutrition and Metabolism (ESPEN) [5]. To date, despite all that significant progress in understanding the importance of establishing these programs, the need for quality assurance and research collaboration among the programs, there is relatively scarce data published on the experience managing pediatric IF in Latin America. In 2018, Gondolesi et al. [6] summarized the data using existing publications and personal surveys to provide a preliminary overview on the management of intestinal failure in middle-income countries from Latin America and Asia (children and adults) [6]. The authors reported that HPN is still not available in all Latin American countries, and that there was significant disparity among these countries, Nutrients 2021, 13, 2754 3 of 18 highlighting the need to pursue the development of registries, guidelines, and health
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