Carolina Rumbo MD, Hector Solar MD, Mariana Ortega Lic, Verónica Busoni MD, Silvia de Barrio MD, Andrés Martinuzzi MD, María Ines Martínez MD, Clara Plata MD, Luciana Donnadio MD, Serralde-Zuñiga Aurora MD, Carola Saure MD, Claudia Perez MD, María Noel Tanzi MD, Alejandra Consuelo MD, Andrés Becerra MD, Alejandra Manzur MD, Diego Arenas Moya MD, Lorena Rudi MD, Eduardo Moreira MD, Martín Buncuga MD, María Isabel Hodgson MD, Rodrigo Sánchez Clariá MD, Adriana Fernandez MD, Gabriel Gondolesi MD
{"title":"Short bowel syndrome related intestinal failure outcomes in Latin America: Insights from the RESTORE Registry","authors":"Carolina Rumbo MD, Hector Solar MD, Mariana Ortega Lic, Verónica Busoni MD, Silvia de Barrio MD, Andrés Martinuzzi MD, María Ines Martínez MD, Clara Plata MD, Luciana Donnadio MD, Serralde-Zuñiga Aurora MD, Carola Saure MD, Claudia Perez MD, María Noel Tanzi MD, Alejandra Consuelo MD, Andrés Becerra MD, Alejandra Manzur MD, Diego Arenas Moya MD, Lorena Rudi MD, Eduardo Moreira MD, Martín Buncuga MD, María Isabel Hodgson MD, Rodrigo Sánchez Clariá MD, Adriana Fernandez MD, Gabriel Gondolesi MD","doi":"10.1002/jpen.2693","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>Short bowel syndrome is considered a low prevalence disease. The scant information available about intestinal failure in Latin America was the driving force to expand this registry.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>A prospective, multicenter observational registry was created for patients with chronic intestinal failure short bowel at specialized centers in Latin America. Demographics, clinical characteristics, nutrition assessment, parenteral nutrition management, intestinal rehabilitation, related complications, clinical outcome, and survival were analyzed.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>From May 2020 to July 2023, 167 patients (115 adults, 52 children) from 20 centers were enrolled. For the adults, the mean age was 37.2 ± 18 years, 48% were female, and the mean follow-up was 22.6 ± 18.3 months. The main etiology was surgical resections (postsurgical complications: 37%; ischemia: 25%); the mean intestinal length was 73 ± 55 cm. The complications were as follows: infections: 0.4/1000 catheter-days; thrombosis: 0.24/1000 catheter-days; liver disease: 2.6%. The outcomes were as follows: 28% were rehabilitated, 15% died, 9.6% were lost to follow-up, 0.9% underwent transplant, and 45.6% continued follow-up. For the children, the mean age 48 ± 52 months, 48% were female, 52% were premature. The mean follow-up was 17.2 ± 5.6 months; the mean remaining intestinal length was 38 ± 45 cm. The leading etiologies were atresia (25%), NEC (23%), and gastroschisis (21%). The complication were as follows: infections: 2/1000 catheter-days; thrombosis: 2.22/1000 catheter-day; 25% developed liver disease. The outcomes were as follows: 7.7% died, 3.8% were rehabilitated, and 88.5% continued follow-up.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>The RESTORE amendment served as a registry and educational tool for the participating teams. The aspiration is to objectively show current aspects of intestinal failure in the region and carry them to international standards. Including all Latin American countries and etiologies of chronic intestinal failure besides short gut would serve to complete this registry.</p>\n </section>\n </div>","PeriodicalId":16668,"journal":{"name":"Journal of Parenteral and Enteral Nutrition","volume":"48 8","pages":"956-964"},"PeriodicalIF":3.2000,"publicationDate":"2024-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Parenteral and Enteral Nutrition","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/jpen.2693","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"NUTRITION & DIETETICS","Score":null,"Total":0}
引用次数: 0
Abstract
Background
Short bowel syndrome is considered a low prevalence disease. The scant information available about intestinal failure in Latin America was the driving force to expand this registry.
Methods
A prospective, multicenter observational registry was created for patients with chronic intestinal failure short bowel at specialized centers in Latin America. Demographics, clinical characteristics, nutrition assessment, parenteral nutrition management, intestinal rehabilitation, related complications, clinical outcome, and survival were analyzed.
Results
From May 2020 to July 2023, 167 patients (115 adults, 52 children) from 20 centers were enrolled. For the adults, the mean age was 37.2 ± 18 years, 48% were female, and the mean follow-up was 22.6 ± 18.3 months. The main etiology was surgical resections (postsurgical complications: 37%; ischemia: 25%); the mean intestinal length was 73 ± 55 cm. The complications were as follows: infections: 0.4/1000 catheter-days; thrombosis: 0.24/1000 catheter-days; liver disease: 2.6%. The outcomes were as follows: 28% were rehabilitated, 15% died, 9.6% were lost to follow-up, 0.9% underwent transplant, and 45.6% continued follow-up. For the children, the mean age 48 ± 52 months, 48% were female, 52% were premature. The mean follow-up was 17.2 ± 5.6 months; the mean remaining intestinal length was 38 ± 45 cm. The leading etiologies were atresia (25%), NEC (23%), and gastroschisis (21%). The complication were as follows: infections: 2/1000 catheter-days; thrombosis: 2.22/1000 catheter-day; 25% developed liver disease. The outcomes were as follows: 7.7% died, 3.8% were rehabilitated, and 88.5% continued follow-up.
Conclusion
The RESTORE amendment served as a registry and educational tool for the participating teams. The aspiration is to objectively show current aspects of intestinal failure in the region and carry them to international standards. Including all Latin American countries and etiologies of chronic intestinal failure besides short gut would serve to complete this registry.
期刊介绍:
The Journal of Parenteral and Enteral Nutrition (JPEN) is the premier scientific journal of nutrition and metabolic support. It publishes original peer-reviewed studies that define the cutting edge of basic and clinical research in the field. It explores the science of optimizing the care of patients receiving enteral or IV therapies. Also included: reviews, techniques, brief reports, case reports, and abstracts.