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2. Endoscopic Surveillance of the Intestinal Allograft: Recommendations From the Intestinal Rehabilitation and Transplant Association Working Group

Author

Garcia, Jennifer, Oltean, Mihai, Rumbo, Carolina, Sharkey, Lisa, Kaufman, Stuart S., Ramos Boluda, Esther, Gupte, Girish, Martinez, Mercedes, Moon, Jang, Raghu, Vikram, Segovia, Maria Cristina, Sudan, Debra, Talbotec, Cécile, Varkey, Jonas, Gondolesi, Gabriel E., Mazariegos, George, and Venick, Robert

Published
2024
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4. Taurolidine lock in pediatric patients with intestinal failure. A practical guideline from the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP)

Author

Núñez-Ramos, Raquel, primary, Germán Díaz, Marta, additional, Moreno Villares, José Manuel, additional, Polo Miquel, Begoña, additional, Salazar Quero, José Carlos, additional, Cabello Ruiz, Vanessa, additional, Redecillas Ferreiro, Susana, additional, and Ramos Boluda, Esther, additional

Published
2024
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6. Los registros de pacientes pediátricos con nutrición artificial en el domicilio. La experiencia española.

Author

Germán Díaz, Marta, Ramos Boluda, Esther, and Moreno Villares, José Manuel

Subjects
*ARTIFICIAL feeding, *PEDIATRIC gastroenterology, *DIET therapy, *CHILD patients, *CHRONIC diseases, *INFANTS, *NUTRITION
Abstract

Background: the number of infants and children who receive artificial nutrition at home has been steadily increasing over the last decades, as better outcomes for children with chronic conditions have been achieved. In order to evaluate the need of resources to implement the technique it is necessary to know how many patients benefit from home artificial nutrition. This information can be estimated from the register of patients, when available. Methods: in this paper the characteristics of all registers were reviewed, especially those devoted to pediatric patients. Results: only two pediatric registers are active in 2023: the Canadian register and the Spanish one. NADYA register from the Spanish Society for Clinical Nutrition and Metabolism (SENPE) and the recent REPAFI, form the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition. The most valuable register from the British Society, BANS, stopped providing information in 2018. Conclusion: despite the fact of acknowledging the importance of having gathered information on the prevalence and incidence of home artificial nutrition, to fit resources to necessities, the number of active registers is quite short. [ABSTRACT FROM AUTHOR]

Published
2024
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7. Endoscopic Surveillance of the Intestinal Allograft: Recommendations From the Intestinal Rehabilitation and Transplant Association Working Group

Author

Garcia, Jennifer, primary, Oltean, Mihai, additional, Rumbo, Carolina, additional, Sharkey, Lisa, additional, Kaufman, Stuart S., additional, Ramos Boluda, Esther, additional, Gupte, Girish, additional, Martinez, Mercedes, additional, Moon, Jang, additional, Raghu, Vikram, additional, Segovia, Maria Cristina, additional, Sudan, Debra, additional, Talbotec, Cécile, additional, Varkey, Jonas, additional, Gondolesi, Gabriel E., additional, Mazariegos, George, additional, and Venick, Robert, additional

Published
2023
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9. 130: FULMINANT EVOLUTION OF A POST-TRANSPLANT LYMPHOPROLIFERATIVE DISEASE AS A COMPLICATION OF MULTIVISCERAL TRANSPLANT

Author

Gonzalez Sacristan, Rocio, primary, Alcolea Sanchez, Alida, additional, Pilar Serrano Fernandez, Maria, additional, Sarria Visa, Marta, additional, García Jiménez, Antonio, additional, Sanchez Galan, Alba, additional, Miren Andres Moreno, Ane, additional, Serradilla Rodriguez, Javier, additional, Hernandez Oliveros, Francisco, additional, and Ramos Boluda, Esther, additional

Published
2023
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10. 127: CHRONIC GRAFT-VERSUS-HOST DISEASE AS THE MAIN COMPLICATION OF MULTIVISCERAL TRANSPLANT IN A PATIENT WITH TRICOHEPATOENTERIC SYNDROME TYPE II

Author

Gonzalez Sacristan, Rocio, primary, Alcolea Sanchez, Alida, additional, Pilar Serrano Fernandez, Maria, additional, Sarria Visa, Marta, additional, Garcia Jimenez, Antonio, additional, Sanchez Galan, Alba, additional, Miren Andres Moreno, Ane, additional, Serradilla Rodriguez, Javier, additional, Talayero Gimenez, Paloma, additional, Hernandez Oliveros, Francisco, additional, and Ramos Boluda, Esther, additional

Published
2023
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13. Antibody-removal therapies for de novo DSA in pediatric intestinal recipients: Why, when, and how? A single-center experience

Author

Lasa-Lázaro, María, primary, Ramos-Boluda, Esther, additional, Mancebo, Esther, additional, Castro-Panete, María José, additional, González-Sacristán, Rocío, additional, Serradilla, Javier, additional, Andrés-Moreno, Ane Miren, additional, Hernández-Oliveros, Francisco, additional, Paz-Artal, Estela, additional, and Talayero, Paloma, additional

Published
2023
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15. Naïve T Cell-Depleted Hematopoietic Graft Combined with Solid Organ Transplantation As Strategy to Induce Tolerance By Transient Mixed Chimerism

Author

Perez, Antonio, primary, López, María Ovidia, additional, González-Sacristán, Rocío, additional, Gasior, Mercedes, additional, Marcos, Antonio, additional, De Paz Arias, Raquel, additional, Alonso, José María, additional, Mestre-Durán, Carmen, additional, Al-Akioui, Karima, additional, Ferreras, Cristina, additional, Balas, Antonio, additional, Vicario, Jose Luis, additional, Solano, Carlos, additional, Estébanez, Belén, additional, Ramos-Boluda, Esther, additional, Jiménez, Carlos, additional, and Hernández-Oliveros, Francisco, additional

Published
2022
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17. Delayed introduction of sirolimus in paediatric intestinal transplant recipients: indications and long‐term benefits

Author

Andres, Ane M., primary, Talayero, Paloma, additional, Alcolea Sanchez, Alida, additional, Sanchez Galán, Alba, additional, Serradilla Rodríguez, Javier, additional, Bueno Jimenez, Alba, additional, Gonzalez Sacristan, Rocío, additional, Stringa, Pablo, additional, Papa Gobbi, Rodrigo, additional, Lasa Lazaro, Maria, additional, Díaz Almirón, Mariana, additional, Ramos Boluda, Esther, additional, Lopez Santamaría, Manuel, additional, and Hernández Oliveros, Francisco, additional

Published
2021
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18. Current Practices on Diagnosis, Prevention and Treatment of Post-Transplant Lymphoproliferative Disorder in Pediatric Patients after Solid Organ Transplantation: Results of ERN TransplantChild Healthcare Working Group Survey

Author

Baker, Alastair, primary, Frauca Remacha, Esteban, additional, Torres Canizales, Juan, additional, Bravo-Gallego, Luz Yadira, additional, Fitzpatrick, Emer, additional, Alonso Melgar, Angel, additional, Muñoz Bartolo, Gema, additional, Garcia Guereta, Luis, additional, Ramos Boluda, Esther, additional, Mozo, Yasmina, additional, Broniszczak, Dorota, additional, Jarmużek, Wioletta, additional, Kalicinski, Piotr, additional, Maecker-Kolhoff, Britta, additional, Carlens, Julia, additional, Baumann, Ulrich, additional, Roy, Charlotte, additional, Chardot, Christophe, additional, Benetti, Elisa, additional, Cananzi, Mara, additional, Calore, Elisabetta, additional, Dello Strologo, Luca, additional, Candusso, Manila, additional, Lopes, Maria Francelina, additional, Brito, Manuel João, additional, Gonçalves, Cristina, additional, Do Carmo, Carmen, additional, Stephenne, Xavier, additional, Wennberg, Lars, additional, Stone, Rosário, additional, Rascon, Jelena, additional, Lindemans, Caroline, additional, Turkiewicz, Dominik, additional, Giraldi, Eugenia, additional, Nicastro, Emanuele, additional, D’Antiga, Lorenzo, additional, Ackermann, Oanez, additional, and Jara Vega, Paloma, additional

Published
2021
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19. Nutrición parenteral domiciliaria en España, 2019: informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Author

Wanden-Berghe, Carmina, Virgili Casas, Nuria, Cuerda Compés, Cristina, Ramos Boluda, Esther, Pereira Cunill, José Luis, Maíz Jiménez, María Irene, Burgos Peláez, Rosa, Gómez Candela, Carmen, Penacho Lázaro, María Ángeles, Sánchez Martos, Eva Ángeles, Luis Román, Daniel Antonio de, Zugasti Murillo, Ana, Martínez Faedo, Ceferino, Álvarez Hernández, Julia, Campos Martín, Cristina, Rioja Vázquez, Rosalía, Irles Rocamora, Juan Antonio, Díaz Guardiola, Patricia, Sanz París, Alejandro, Matía Martín, Pilar, Carabaña Pérez, Fátima, Martín Folgueras, Tomás, Martín Palmero, María Ángela, Luengo Pérez, Luis Miguel, Martínez Costa, Cecilia, Tejera Pérez, Cristina, Arraiza Irigoyen, Carmen, Sánchez-Vilar Burdiel, Olga, García Delgado, Yaiza, Ponce González, Miguel Á., Mauri Roca, Sílvia, García Zafra, María Victoria, Germán Díaz, Marta, Morán López, Jesús M., Molina Baeza, Begoña, Gonzalo Marín, Montserrat, Sánchez Sánchez, Rebeca, Calañas Continente, Alfonso, Garde Orbaiz, Carmen, Martínez Olmos, Miguel Ángel, Joaquín Ortiz, Clara, Suárez Llanos, José Pablo, Forga Visa, María De Talló, Gil Martinez, M.ª Carmen, Carrera Santaliestra, María José, Padín López, Susana, Lobo, Gabriela, Apezetxea Celaya, Antxón, Ballesta Sánchez, Carmen, Bonada Sanjaume, Anna, Cánovas Gaillemin, Bárbara, Cardona Pera, Daniel, García Puente, Ignacio, Higuera Pulgar, Isabel, Miserachs Aranda, Nuria, Olmo García, María Dolores del, Palma Milla, Samara, Parés Marimón, Rosa María, and Pintor de la Maza, Begoña

Subjects
Alimentació parenteral, Parenteral feeding, Home care services, Atenció domiciliària
Abstract

RESUMEN Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadyasenpe.com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue “oncológico paliativo” y “otros” (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD.

Published
2021

20. Home and Ambulatory Artificial Nutrition (NADYA) Group report: home parenteral nutrition in Spain, 2019

Author

Wanden-Berghe,Carmina, Virgili Casas,Nuria, Cuerda Compes,Cristina, Ramos Boluda,Esther, Pereira Cunill,José Luis, Maiz Jiménez,María Irene, Universidad de Sevilla. Departamento de Medicina, and Universidad de Sevilla. CTS444 : Endocrinología, Metabolismo y Nutrición clínica.

Subjects
Home parenteral nutrition, Registry, Soporte nutricional, Epidemiology, Cuidados domiciliarios, Registros, Epidemiología, Records, Nutrición parenteral domiciliaria, Nutrición parenteral, Home care services, Parenteral nutrition, Nutritional support
Abstract

Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadya-senpe. com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue “oncológico paliativo” y “otros” (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD. Aim: to communicate the home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe. com) for the year 2019. Material and methods: a descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1 to December 31, 2019. Results: a total of 283 patients (51.9 % women), 31 children, and 252 adults from 47 Spanish hospitals were registered, which represents a prevalence rate of 6.01 patients per million inhabitants for year 2019. The most frequent diagnosis in adults was “palliative oncological” and “others” (21.0 %). In children, it was Hirschsprung’s disease together with necrotizing enterocolitis, alterations in intestinal motility, and chronic intestinal pseudo-obstruction, with 4 cases each (12.9 %). The first reason for the indication was short-bowel syndrome in both children (51.6 %) and adults (37.3 %). The most used type of catheter was tunnelled both in children (75.9 %) and in adults (40.8 %). Sixty-eight episodes ended, all in adults, and the most frequent cause was death (54.4 %); 38.2 % were switched to oral. Conclusions: the number of collaborating centers and professionals in the NADYA registry is increasing. The main indications and reasons for HPN termination remain stable.

Published
2021

21. Congenital Diarrhea and Cholestatic Liver Disease: Phenotypic Spectrum Associated with MYO5B Mutations

Author

Aldrian, Denise, primary, Vogel, Georg F., additional, Frey, Teresa K., additional, Ayyıldız Civan, Hasret, additional, Aksu, Aysel Ünlüsoy, additional, Avitzur, Yaron, additional, Ramos Boluda, Esther, additional, Çakır, Murat, additional, Demir, Arzu Meltem, additional, Deppisch, Caroline, additional, Duba, Hans-Christoph, additional, Düker, Gesche, additional, Gerner, Patrick, additional, Hertecant, Jozef, additional, Hornová, Jarmila, additional, Kathemann, Simone, additional, Koeglmeier, Jutta, additional, Koutroumpa, Arsinoi, additional, Lanzersdorfer, Roland, additional, Lev-Tzion, Raffi, additional, Lima, Rosa, additional, Mansour, Sahar, additional, Meissl, Manfred, additional, Melek, Jan, additional, Miqdady, Mohamad, additional, Montoya, Jorge Hernan, additional, Posovszky, Carsten, additional, Rachman, Yelena, additional, Siahanidou, Tania, additional, Tabbers, Merit, additional, Uhlig, Holm H., additional, Ünal, Sevim, additional, Wirth, Stefan, additional, Ruemmele, Frank M., additional, Hess, Michael W., additional, Huber, Lukas A., additional, Müller, Thomas, additional, Sturm, Ekkehard, additional, and Janecke, Andreas R., additional

Published
2021
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22. Home and Ambulatory Artificial Nutrition (NADYA) Group report: home parenteral nutrition in Spain, 2019

Author

Wanden-Berghe, Carmina, primary, Virgili Casas, Nuria, additional, Cuerda Compés, Cristina, additional, Ramos Boluda, Esther, additional, Pereira Cunill, José Luis, additional, Maíz Jiménez, María Irene, additional, Burgos Peláez, Rosa, additional, Gómez Candela, Carmen, additional, Penacho Lázaro, María Ángeles, additional, Sánchez Martos, Eva Ángeles, additional, de Luis Román, Daniel Antonio, additional, Zugasti Murillo, Ana, additional, Martínez Faedo, Ceferino, additional, Álvarez Hernández, Julia, additional, Campos Martín, Cristina, additional, Rioja-vázquez, Rosalía, additional, Irles Rocamora, Juan Antonio, additional, Díaz Guardiola, Patricia, additional, Sanz París, Alejandro, additional, Matía Martín, Pilar, additional, Carabaña Pérez, Fátima, additional, Martín Folgueras, Tomás, additional, Martín Palmero, María Ángela, additional, Luengo Pérez, Luis Miguel, additional, Martínez Costa, Cecilia, additional, Tejera Pérez, Cristina, additional, Arraiza Irigoyen, Carmen, additional, Sánchez-Vilar Burdiel, Olga, additional, García Delgado, Yaiza, additional, Ponce González, Miguel Á., additional, Mauri Roca, Sílvia, additional, García Zafra, María Victoria, additional, Germán Díaz, Marta, additional, Morán López, Jesús M., additional, Molina Baeza, Begoña, additional, Gonzalo Marín, Montserrat, additional, Sánchez Sánchez, Rebeca, additional, Calañas Continente, Alfonso, additional, Garde Orbaiz, Carmen, additional, Martínez Olmos, Miguel Ángel, additional, Joaquín Ortiz, Clara, additional, Suárez Llanos, José Pablo, additional, Forga Visa, María de Talló, additional, Gil Martinez, M.ª Carmen, additional, Carrera Santaliestra, María José, additional, Padín López, Susana, additional, Lobo, Gabriela, additional, Apezetxea Celaya, Antxón, additional, Ballesta Sánchez, Carmen, additional, Bonada Sanjaume, Anna, additional, Cánovas Gaillemin, Bárbara, additional, Cardona Pera, Daniel, additional, García Puente, Ignacio, additional, Higuera Pulgar, Isabel, additional, Miserachs Aranda, Nuria, additional, del Olmo García, María Dolores, additional, Palma Milla, Samara, additional, Parés Marimón, Rosa María, additional, and Pintor de la Maza, Begoña, additional

Published
2021
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23. Nutrición parenteral domiciliaria en España 2018. Informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Author

Wanden-Berghe, Carmina, Cuerda Compes, Cristina, Maíz Jiménez, María, Pereira Cunill, José Luis, Ramos Boluda, Esther, Gómez Candela, Carmen, Virgili, Núria, Burgos Peláez, Rosa, Luis Roman, Daniel A. de, Penacho Lázaro, Mª Ángeles, Sánchez Martos, Eva Ángeles, Martínez Faedo, Ceferino, Díaz Guardiola, Patricia, Álvarez Hernández, Julia, Zugasti Murillo, Ana, Martín, Cristina Campos, Sanz Paris, Alejandro, Martín Fontalba, María de los Ángeles, Lobo Támer, Gabriela, Matía Martín, Pilar, Carabaña Pérez, Fátima, Martín Folgueras, Tomás, Martín Palmero, M.ª Ángela, Luengo Pérez, Luis Miguel, Sánchez Vilar-Burdiel, Olga, Martínez Costa, Cecilia, Tejera, Cristina, Martínez Ramírez, María José, García Delgado, Yaiza, Ponce González, Miguel Ángel, Roca, Sílvia Mauri, García Zafra, María Victoria, Germán Díaz, Marta, Gabino, Victoria, Molina Baeza, Begoña, Gonzalo Marín, Montserrat, Irles Rocamora, José Antonio, Sánchez Sánchez, Rebeca, Apezetxea Celaya, Antxón, Joaquín Ortiz, Clara, Suárez Llanos, José Pablo, Pintor de la Maza, Begoña, Leyes, Pere, Martínez, M.ª Carmen Gil, Carrera Santaliestra, María José, and Grupo NADYA-SENPE

Subjects
Alimentació parenteral, Parenteral feeding, Nutrició, Nutrition
Abstract

Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadya-senpe.com) del año 2018. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE del 1 de enero al 31 de diciembre de 2018. Resultados: se registraron 278 pacientes (54, 7% mujeres), 23 niños y 255 adultos, procedentes de 45 hospitales españoles, lo que representa una tasa de prevalencia de 5, 95 pacientes/millón de habitantes/año 2018. El diagnóstico más frecuente en adultos fue “oncológico paliativo” (22, 0%), seguido de “otros”. En niños fue la enfermedad de Hirschsprung junto con la enterocolitis necrotizante, con cuatro casos (17, 4%). El primer motivo de indicación fue síndrome de intestino corto tanto en niños (60, 9%) como en adultos (35, 7%). El tipo de catéter más utilizado fue el tunelizado tanto en niños (81, 0%) como en adultos (41, 1%). Finalizaron 75 episodios, la causa más frecuente fue el fallecimiento (52, 0%) y el paso a vía oral (33, 3%). Conclusiones: el número de centros y profesionales colaboradores en el registro de pacientes que reciben NPD se mantiene estable, así como las principales indicaciones y los motivos de finalización de la NPD. Aim: To communicate home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe. com) for the year 2018. Material and methods: Descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2018 to December 31st, 2018. Results: There were 278 patients from 45 Spanish hospitals (54.7% women), 23 children and 255 adults, which represent a prevalence rate of 5.95 patients/million inhabitants/year 2018. The most frequent diagnosis in adults was “palliative cancer” (22.0%), followed by “others”. In children it was Hirschsprung’s disease together with necrotizing enterocolitis, with four cases (17.4%). The first indication was short bowel syndrome in both children (60.9%) and adults (35.7%). The most frequently used type of catheter was tunneled in both children (81.0%) and adults (41.1%). Ending 75 episodes, the most frequent cause was death (52.0%) and change to oral feeding (33.3%). Conclusions: The number of centers and collaborating professionals in the registry of patients receiving HPN remains stable, as well as the main indications and reasons for termination of HPN.

Published
2020

24. Nutrición parenteral domiciliaria en España 2018. Informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Author

Wanden-Berghe,Carmina, Cuerda Compes,Cristina, Maíz Jiménez,María Irene, Pereira Cunill,José Luis, Ramos Boluda,Esther, Gómez Candela,Carmen, Virgili Casas,Nuria, Burgos Peláez,Rosa, Luis Román,Daniel Antonio de, Penacho Lázaro,Mª Ángeles, Sánchez Martos,Eva Ángeles, Martínez Faedo,Ceferino, Díaz Guardiola,Patricia, Álvarez Hernández,Julia, Zugasti Murillo,Ana, Campos Martín,Cristina, Sanz Paris,Alejandro, Martín Fontalba,María de los Ángeles, Lobo,Gabriela, Matía Martín,Pilar, Carabaña Pérez,Fátima, Martín Folgueras,Tomás, Martín Palmero,Mª Ángela, Luengo Pérez,Luis Miguel, Sánchez-Vilar Burdiel,Olga, Martínez Costa,Cecilia, Tejera Pérez,Cristina, Martínez Ramírez,María José, García Delgado,Yaiza, Ponce González,Miguel Á, Mauri Roca,Silvia, García Zafra,Mª Victoria, Germán Díaz,Marta, Romero Gabino,Victoria, Molina Baeza,Begoña, Gonzalo Marín,Montserrat, Irles Rocamora,José Antonio, Sánchez Sánchez,Rebeca, Apezetxea Celaya,Antxón, Joaquín Ortiz,Clara, Suárez Llanos,José Pablo, Pintor de la Maza,Begoña, Leyes García,Pere, Gil Martínez,Mª Carmen, and Carrera Santaliestra,María José

Subjects
Soporte nutricional, Cuidados domiciliarios, Registros, Epidemiología, Nutrición parenteral domiciliaria, Nutrición parenteral
Abstract

Resumen Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (http://www.nadya-senpe.com) del año 2018. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE del 1 de enero al 31 de diciembre de 2018. Resultados: se registraron 278 pacientes (54,7 % mujeres), 23 niños y 255 adultos, procedentes de 45 hospitales españoles, lo que representa una tasa de prevalencia de 5,95 pacientes/millón de habitantes/año 2018. El diagnóstico más frecuente en adultos fue “oncológico paliativo” (22,0 %), seguido de “otros”. En niños fue la enfermedad de Hirschsprung junto con la enterocolitis necrotizante, con cuatro casos (17,4 %). El primer motivo de indicación fue síndrome de intestino corto tanto en niños (60,9 %) como en adultos (35,7 %). El tipo de catéter más utilizado fue el tunelizado tanto en niños (81,0 %) como en adultos (41,1 %). Finalizaron 75 episodios, la causa más frecuente fue el fallecimiento (52,0 %) y el paso a vía oral (33,3 %). Conclusiones: el número de centros y profesionales colaboradores en el registro de pacientes que reciben NPD se mantiene estable, así como las principales indicaciones y los motivos de finalización de la NPD.

Published
2020

25. Novel coronavirus (SARS‐CoV‐2) infection in a patient with multivisceral transplant

Author

Papa‐Gobbi, Rodrigo, primary, Bueno, Alba, additional, Serradilla, Javier, additional, Talayero, Paloma, additional, Stringa, Pablo, additional, Pascual‐Miguel, Bárbara, additional, Alcolea‐Sánchez, Alida, additional, González‐Sacristan, Rocío, additional, Andrés, Ane M., additional, López‐Santamaría, Manuel, additional, Rumbo, Martín, additional, Ramos‐Boluda, Esther, additional, and Hernández‐Oliveros, Francisco, additional

Published
2020
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26. PREDICTORS OF MORTALITY AND CLINICAL CHARACTERISTICS AMONG CARBAPENEM-RESISTANT OR CARBAPENEMASE-PRODUCING ENTEROBACTERIACEAE BLOODSTREAM INFECTION IN SPANISH CHILDREN

Author

Ara Montojo, Maria Fatima, primary, Escosa Garcia, Luis, additional, Alguacil, Marina, additional, Seara, Nieves, additional, Zozaya, Carlos, additional, Plaza, Diego, additional, Schuffelmann-Gutierrez, Cristina, additional, De la Vega, Angela, additional, Fernandez-Camblor, Carlota, additional, Ramos-Boluda, Esther, additional, Romero-Gomez, Maria Pilar, additional, Ruiz-Carrascoso, Guillermo, additional, Losantos-Garcia, Itsaso, additional, Mellado, Maria Jose, additional, and Gomez-Gil, Rosa, additional

Published
2020
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27. Home and Ambulatory Artificial Nutrition (NADYA) Group Report. Home parenteral nutrition in Spain, 2018

Author

Wanden-Berghe Lozano, Carmina, primary, Cuerda Compes, Cristina, additional, Maíz Jiménez, María, additional, Pereira Cunill, José Luis, additional, Ramos Boluda, Esther, additional, Gómez Candela, Carmen, additional, Virgili Casas, María Nuria, additional, Burgos Peláez, Rosa, additional, de Luis, Daniel A., additional, Penacho Lázaro, Mª Ángeles, additional, Sánchez Martos, Eva Ángeles, additional, Martínez Faedo, Ceferino, additional, Díaz Guardiola, Patricia, additional, Álvarez Hernández, Julia, additional, Zugasti Murillo, Ana, additional, Campos Martín, Cristina, additional, Sanz Paris, Alejandro, additional, Martín Fontalba, María de los Ángeles, additional, Lobo-Támer, Gabriela, additional, Matía Martín, María Pilar, additional, Carabaña Pérez, Fátima, additional, Martín Folgueras, Tomás, additional, Martín Palmero, M.ª Ángela, additional, Luengo Pérez, Luis Miguel, additional, Sánchez-Vilar Burdiel, Olga, additional, Martínez Costa, Cecilia, additional, Tejera, Cristina, additional, Martínez Ramírez, María José, additional, García Delgado, Yaiza, additional, Ponce González, Miguel Ángel, additional, Mauri Roca, Sílvia, additional, García Zafra, María Victoria, additional, Germán Díaz, Marta, additional, Romero, Victoria, additional, Molina Baeza, Begoña, additional, Gonzalo Marín, Montserrat, additional, Irles Rocamora, José Antonio, additional, Sánchez Sánchez, Rebeca, additional, Apezetxea Celaya, Antxón, additional, Joaquín Ortiz, Clara, additional, Suárez Llanos, José Pablo, additional, Pintor de la Maza, Begoña, additional, Leyes García, Pere, additional, Gil Martinez, M.ª Carmen, additional, and Carrera Santaliestra, María José, additional

Published
2020
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28. [Home and Ambulatory Artificial Nutrition (NADYA) Report. Home Parenteral Nutrition in Spain, 2017]

Author

Wanden-Berghe Lozano, Carmina, Pereira Cunill, José Luis, Cuerda Compes, Cristina, Ramos Boluda, Esther, Maiz Jiménez, María Irene, Gómez Candela, Carmen, Virgili Casas, Nuria, Burgos Peláez, Rosa, Pérez de la Cruz, Antonio, Penacho Lázaro, M ª Ángeles, Sánchez Martos, Eva Ángeles, De Luis Román, Daniel Antonio, Martínez Faedo, Ceferino, Martín Fontalba, María de Los Ángeles, Álvarez Hernández, Julia, Matía Martín, Pilar, Díaz Guardiola, Patricia, Carabaña Pérez, Fátima, Sanz París, Alejandro, Garde Orbaiz, Carmen, Sánchez-Vilar Burdiel, Olga, Martín Folgueras, Tomás, Martín Palmero, M ª Ángela, Luengo Pérez, Luis Miguel, Zugasti Murillo, Ana, Martínez Costa, Cecilia, Suárez Llanos, José Pablo, Tejera Pérez, Cristina, Irles Rocamora, José Antonio, Arraiza Irigoyen, Carmen, García Delgado, Yaiza, Campos Martín, Cristina, Ponce González, Miguel Ángel, Mauri Roca, Silvia, García Zafra, M ª Victoria, Morán López, Jesús M, Molina Baeza, Begoña, Gonzalo Marín, Montserrat, Joaquín Ortiz, Clara, Pintor de la Maza, Begoña, Gil Martínez, M ª Carmen, Carrera Santaliestra, María José, Forga Visa, M ª Del Talló, Apezetxea Celaya, Antxón, Sánchez Sánchez, Rebeca, and Urgeles Planella, Juan Ramón

Subjects
Adult, Male, Short Bowel Syndrome, Spain, Neoplasms, Palliative Care, Humans, Female, Hirschsprung Disease, Registries, Child, Parenteral Nutrition, Home
Abstract

to communicate HPN data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2017.descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2017 to December 31st, 2017.there were 308 patients from 45 Spanish hospitals (54.5% women), 38 children and 270 adults, with 3,012 episodes, which represent a prevalence rate of 6.61 patients/million inhabitants/year 2017. The most frequent diagnosis in adults was "palliative cancer" (25.6%), followed by "others". In children, it was Hirschsprung's disease with six cases (15.8%). The first indication was short bowel syndrome in both children (55.3%) and adults (33.7%). The most frequently used type of catheter was tunneled in both children (73.4%) and adults (38.2%). Ending 81 episodes, the most frequent cause was death (62.9%) and transition to oral feeding (34.7%).the progressive increase of collaborating centers and professionals in the registry of patients receiving NPD is maintained. The main indications of HPN and the motive for ending have remained stable.OBJETIVO: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadya-senpe. com) del año 2017. MATERIAL Y MÉTODOS: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2017. RESULTADOS: se registraron 308 pacientes (54,5% mujeres), 38 niños y 270 adultos, procedentes de 45 hospitales españoles, en total 312 episodios, lo que representa una tasa de prevalencia de 6,61 pacientes/millón de habitantes/año 2017. El diagnóstico más frecuente en adultos fue “oncológico paliativo” (25,6%), seguido de “otros”. En niños fue la enfermedad de Hirschsprung, con seis casos (15,8%). El primer motivo de indicación fue síndrome de intestino corto tanto en niños (55,3%) como en adultos (33,7%). El tipo de catéter más utilizado fue el tunelizado tanto en niños (74,3%) como en adultos (38,2%). Finalizaron 81 episodios; la causa más frecuente fue el fallecimiento (62,9%) y que pasaron a vía oral (34,7%). CONCLUSIONES: se mantiene el incremento progresivo de centros y profesionales colaboradores en el registro de pacientes que reciben NPD. Las principales indicaciones de NPD y de motivo de finalización se mantienen estables.

Published
2018

29. Current Practices on Diagnosis, Prevention and Treatment of Post-Transplant Lymphoproliferative Disorder in Pediatric Patients after Solid Organ Transplantation: Results of ERN Transplant Child Healthcare Working Group Survey.

Author

Baker, Alastair, Frauca Remacha, Esteban, Torres Canizales, Juan, Bravo-Gallego, Luz Yadira, Fitzpatrick, Emer, Melgar, Angel Alonso, Muñoz Bartolo, Gema, Guereta, Luis Garcia, Ramos Boluda, Esther, Mozo, Yasmina, Broniszczak, Dorota, Jarmużek, Wioletta, Kalicinski, Piotr, Maecker-Kolhoff, Britta, Carlens, Julia, Baumann, Ulrich, Roy, Charlotte, Chardot, Christophe, Benetti, Elisa, and Cananzi, Mara

Subjects
LYMPHOPROLIFERATIVE disorders, CHILDREN'S health, TRANSPLANTATION of organs, tissues, etc., GRAFT rejection, IMMUNOSUPPRESSION, EPSTEIN-Barr virus
Abstract

Background: Post-transplant lymphoproliferative disease (PTLD) is a significant complication of solid organ transplantation (SOT). However, there is lack of consensus in PTLD management. Our aim was to establish a present benchmark for comparison between international centers and between various organ transplant systems and modalities; (2) Methods: A cross-sectional questionnaire of relevant PTLD practices in pediatric transplantation was sent to multidisciplinary teams from 17 European center members of ERN TransplantChild to evaluate the centers' approach strategies for diagnosis and treatment and how current practices impact a cross-sectional series of PTLD cases; (3) Results: A total of 34 SOT programs from 13 European centers participated. The decision to start preemptive treatment and its guidance was based on both EBV viremia monitoring plus additional laboratory methods and clinical assessment (61%). Among treatment modalities the most common initial practice at diagnosis was to reduce the immunosuppression (61%). A total of 126 PTLD cases were reported during the period 2012-2016. According to their histopathological classification, monomorphic lesions were the most frequent (46%). Graft rejection after PTLD remission was 33%. Of the total cases diagnosed with PTLD, 88% survived; (4) Conclusions: There is still no consensus on prevention and treatment of PTLD, which implies the need to generate evidence. This might successively allow the development of clinical guidelines. [ABSTRACT FROM AUTHOR]

Published
2021
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31. Nutrición parenteral domiciliaria en España 2017. Informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Author

Wanden-Berghe Lozano, Carmina, primary, Pereira Cunill, José Luis, additional, Cuerda Compes, Cristina, additional, Ramos Boluda, Esther, additional, Maiz Jiménez, María Irene, additional, Gómez Candela, Carmen, additional, Virgili Casas, Nuria, additional, Burgos Peláez, Rosa, additional, Pérez de la Cruz, Antonio, additional, Penacho Lázaro, M.ª Ángeles, additional, Sánchez Martos, Eva Ángeles, additional, De Luis Román, Daniel Antonio, additional, Martínez Faedo, Ceferino, additional, Martín Fontalba, María de los Ángeles, additional, Álvarez Hernández, Julia, additional, Matía Martín, Pilar, additional, Díaz Guardiola, Patricia, additional, Carabaña Pérez, Fátima, additional, Sanz París, Alejandro, additional, Garde Orbaiz, Carmen, additional, Sánchez-Vilar Burdiel, Olga, additional, Martín Folgueras, Tomás, additional, Martín Palmero, M.ª Ángela, additional, Luengo Pérez, Luis Miguel, additional, Zugasti Murillo, Ana, additional, Martínez Costa, Cecilia, additional, Suárez Llanos, José Pablo, additional, Tejera Pérez, Cristina, additional, Irles Rocamora, José Antonio, additional, Arraiza Irigoyen, Carmen, additional, García Delgado, Yaiza, additional, Campos Martín, Cristina, additional, Ponce González, Miguel Ángel, additional, Mauri Roca, Silvia, additional, García Zafra, M.ª Victoria, additional, Morán López, Jesús M., additional, Molina Baeza, Begoña, additional, Gonzalo Marín, Montserrat, additional, Joaquín Ortiz, Clara, additional, Pintor de la Maza, Begoña, additional, Gil Martínez, M.ª Carmen, additional, Carrera Santaliestra, María José, additional, Forga Visa, M.ª del Talló, additional, Apezetxea Celaya, Antxón, additional, Sánchez Sánchez, Rebeca, additional, and Urgeles Planella, Juan Ramón, additional

Published
2018
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32. Donor‐Specific Antibodies in Pediatric Intestinal and Multivisceral Transplantation: The Role of Liver and Human Leukocyte Antigen Mismatching

Author

Talayero, Paloma, primary, Ramos Boluda, Esther, additional, Gómez Massa, Elena, additional, Castro Panete, María José, additional, Prieto Bozano, Gerardo, additional, Hernández Oliveros, Francisco, additional, López Santamaría, Manuel, additional, Calvo Pulido, Jorge, additional, Paz‐Artal, Estela, additional, and Mancebo, Esther, additional

Published
2018
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33. Novel coronavirus (SARS‐CoV‐2) infection in a patient with multivisceral transplant.

Author

Papa‐Gobbi, Rodrigo, Bueno, Alba, Serradilla, Javier, Talayero, Paloma, Stringa, Pablo, Pascual‐Miguel, Bárbara, Alcolea‐Sánchez, Alida, González‐Sacristan, Rocío, Andrés, Ane M., López‐Santamaría, Manuel, Rumbo, Martín, Ramos‐Boluda, Esther, and Hernández‐Oliveros, Francisco

Subjects
SARS-CoV-2, VISCERAL pain, COVID-19, INFECTION
Abstract

More experience needs to be accumulated in order to conclude whether transplanted patients represent or not a group of risk for SARS-CoV-2 infection and determine the best way to handle immunosuppression treatment. Novel coronavirus (SARS-CoV-2) infection in a patient with multivisceral transplant To the Editor, Coronavirus disease 2019 (COVID-19) pandemic has become one of the most challenging episodes in the history of modern public health, with particular emphasis in high-risk population.1 However, the evidence regarding their response to the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the agent responsible for COVID-19 is scant.2 Herein, we present the clinical and therapeutic course of a SARS-CoV-2 infection in a patient with multivisceral transplant and a recent tuberculosis infection. [Extracted from the article]

Published
2021
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34. Pediatric transplantation in Europe during the COVID‐19 pandemic: Early impact on activity and healthcare.

Author

Doná, Daniele, Torres Canizales, Juan, Benetti, Elisa, Cananzi, Mara, De Corti, Federica, Calore, Elisabetta, Hierro, Loreto, Ramos Boluda, Esther, Melgosa Hijosa, Marta, Garcia Guereta, Luis, Pérez Martínez, Antonio, Barrios, Maribel, Costa Reis, Patricia, Teixeira, Ana, Lopes, Maria Francelina, Kaliciński, Piotr, Branchereau, Sophie, Boyer, Olivia, Debray, Dominque, and Sciveres, Marco

Subjects
COVID-19 pandemic, HEMATOPOIETIC stem cell transplantation, CHILD patients, COVID-19, TRANSPLANTATION of organs, tissues, etc.
Abstract

The current pandemic SARS‐CoV‐2 has required an unusual allocation of resources that can negatively impact chronically ill patients and high‐complexity procedures. Across the European Reference Network on Pediatric Transplantation (ERN TransplantChild), we conducted a survey to investigate the impact of the COVID‐19 outbreak on pediatric transplant activity and healthcare practices in both solid organ transplantation (SOT) and hematopoietic stem cell transplantation (HSCT). The replies of 30 professionals from 18 centers in Europe were collected. Twelve of 18 centers (67%) showed a reduction in their usual transplant activity. Additionally, outpatient visits have been modified and restricted to selected ones, and the use of telemedicine tools has increased. Additionally, a total of 14 COVID‐19 pediatric transplanted patients were identified at the time of the survey, including eight transplant recipients and six candidates for transplantation. Only two moderate‐severe cases were reported, both in HSCT setting. These survey results demonstrate the limitations in healthcare resources for pediatric transplantation patients during early stages of this pandemic. COVID‐19 disease is a major worldwide challenge for the field of pediatric transplantation, where there will be a need for systematic data collection, encouraging regular discussions to address the long‐term consequences for pediatric transplantation candidates, recipients, and their families. [ABSTRACT FROM AUTHOR]

Published
2020
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35. Home and Ambulatory Artiificial Nutrition (NADYA) Group Report - Home parenteral nutrition in Spain, 2016

Author

Wanden-Berghe, Carmina, Virgili Casas, Nuria, Ramos Boluda, Esther, Cuerda Compes, Cristina, Moreno Villares, José Manuel, Pereira Cunill, José Luis, Gómez Candela, Carmen, Burgos Peláez, Rosa, Penacho Lázaro, M.ª Ángeles, Pérez de la Cruz, Antonio, Álvarez Hernández, Julia, Gonzalo Marín, Montserrat, Matía Martín, Pilar, Martínez Faedo, Ceferino, Sánchez Martos, Eva Ángeles, Sanz Paris, Alejandro, Campos Martín, Cristina, Martín Folgueras, Tomás, Martín Palmero, M. Ángela, Martín Fontalba, María de los Ángeles, Luengo Pérez, Luis Miguel, Zugasti Murillo, Ana, Martínez Ramírez, María José, Carabaña Pérez, Fátima, Martínez Costa, Cecilia, Díaz Guardiola, Patricia, Tejera Pérez, Cristina, Parés Marimón, Rosa M.ª, Irles Rocamora, José Antonio, Garde Orbaiz, Carmen, Ponce González, Miguel Ángel, García Zafra, María Victoria, Sánchez Sánchez, Rebeca, Urgeles Planella, Juan Ramón, Apezetxea Celaya, Antxón, Sánchez-Vilar Burdiel, Olga, Joaquín Ortiz, Clara, Suárez Llanos, José Pablo, Pintor de la Maza, Begoña, Leyes García, Pere, Gil Martínez, M.ª Carmen, Mauri Roca, Silvia, and Carrera Santaliestra, María José

Subjects
Home parenteral nutrition, Soporte nutricional, Epidemiology, Cuidados domiciliarios, Registros, Epidemiología, Nutrición parenteral domiciliaria, Nutrición parenteral, Registries, Home care services, Parenteral nutrition, Nutritional support
Abstract

Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria (NADYA-SENPE; www.nadya-senpe.com) del año 2016. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2016. Resultados: se registraron 286 pacientes (54,2% mujeres), 34 niños y 252 adultos, procedentes de 42 hospitales españoles con 294 episodios, lo que representa una tasa de prevalencia de 6,16 pacientes/millón de habitantes/año 2016. El diagnóstico más frecuente en adultos fue de oncológico paliativo (25,8%), seguido de otros. En niños, fue de alteraciones de la motilidad con 6 casos (17,6%), la enfermedad de Hirschsprung y la enterocolitis necrotizante, ambos con 5 niños (14,7%). El primer motivo de indicación fue síndrome de intestino corto tanto en niños (64,7%) como en adultos (37,3%), seguido de obstrucción intestinal, 28,6% en adultos y 14,7% en niños. El tipo de catéter más utilizado fue el tunelizado tanto en niños (70,6%) como en adultos (37,9%), y la complicación más frecuente en adultos fue la infección relacionada con el catéter, que presentó una tasa de 0,48 infecciones/1.000 días de NPD. Durante este periodo, finalizaron 71 episodios en adultos siendo la causa de finalización principal el fallecimiento (57,7%) y paso a vía oral (31%). Conclusiones: se constata un incremento progresivo de centros y profesionales colaboradores en el registro de pacientes que reciben NPD. Las principales indicaciones de NPD y de motivo de finalización se mantienen estables. Objective: To communicate HPN data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2016. Material and methods: Descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2016 to December 31 st, 2016. Results: There were 286 patients from 42 Spanish hospitals (54.2% women), 34 children and 252 adults, with 294 episodes, which represent a prevalence rate of 6.16 patients / million inhabitants / year 2016. The most frequent diagnosis in adults was "palliative cancer" (25.8%), followed by "others". In children it was "motility alterations" with 6 cases (17.6%), Hirschsprung's disease and necrotising enterocolitis, both with 5 children (14.7%). The first indication was short bowel syndrome in both children (64.7%) and adults (37.3%), followed by intestinal obstruction in 28.6% adults and 14.7% in children. The most frequently used type of catheter was tunnelled in both children (70.6%) and adults (37.9%). The most frequent complication in adults was infection related to the catheter, which presented a rate of 0.48 infections / 1,000 days of NPD. During this period, 71 episodes ended in adults and the main cause was death (57.7%) followed by resuming the oral route (31%). Conclusions: There is a progressive increase of centers and professional collaborators in the registry who report patients receiving parenteral nutrition at home. The main indications of HPN and the motive for ending have remained stable.

Published
2017

45. Sellado con taurolidina en el fracaso intestinal pediátrico. Guía práctica de la Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica (SEGHNP).

Author

Núñez-Ramos, Raquel, Germán Díaz, Marta, Moreno Villares, José Manuel, Miquel, Begoña Polo, Salazar Quero, José Carlos, Cabello Ruiz, Vanessa, Ferreiro, Susana Redecillas, and Ramos Boluda, Esther

Subjects
*CENTRAL line-associated bloodstream infections, *LITERATURE reviews, *CHILD patients, *PARENTERAL feeding, *CRITICAL care medicine
Abstract

Objectives: the prevention of central line-associated bloodstream infections is a critical aspect of care for patients with intestinal failure who are treated with parenteral nutrition. The use of taurolidine in this context is becoming increasingly popular, however there is a lack of standardization in its pediatric application. The objective of this work is to develop a guide to support its prescription. Methodology: the guide is based on a review of the literature and expert opinions from the Intestinal Failure Group of the SEGHNP. It was developed through a survey distributed to all its members, addressing aspects of usual practice with this lock solution. Results: this manuscript presents general recommendations concerning taurolidine indications, commercial presentations, appropriate forms of administration, use in special situations, adverse reactions, and contraindications in the pediatric population Conclusions: taurolidine is emerging as the primary lock solution used to prevent central line-associated bloodstream infections, proving to be safe and effective. This guide aims to optimize and standardize its use in pediatrics. [ABSTRACT FROM AUTHOR]

Published
2024
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46. Nutrición parenteral domiciliaria en España 2016; informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA.

Author

Wanden-Berghe, Carmina, Virgili Casas, Nuria, Ramos Boluda, Esther, Cuerda Compes, Cristina, Moreno Villares, José Manuel, Pereira Cunill, José Luis, Gómez Candela, Carmen, Burgos Peláez, Rosa, Penacho Lázaro, Maria Ángeles, de la Cruz, Antonio Pérez, Álvarez Hernández, Julia, Gonzalo Marín, Montserrat, Matía Martín, Pilar, Martínez Faedo, Ceferino, Sánchez Martos, Eva Ángeles, Sanz Paris, Alejandro, Campos Martín, Cristina, Martín Folgueras, Tomás, Palmero, M. Ángela Martín, and de los Ángeles Martín Fontalba, María

Subjects
*GASTROINTESTINAL disease treatment, *HOME care service statistics, *OUTPATIENT medical care, *GASTROINTESTINAL diseases, *HOME care services, *NUTRITION, *ACQUISITION of data
Abstract

Objective: To communicate HPN data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2016.Material and Methods: Descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2016 to December 31st, 2016.Results: There were 286 patients from 42 Spanish hospitals (54.2% women), 34 children and 252 adults, with 294 episodes, which represent a prevalence rate of 6.16 patients / million inhabitants / year 2016. The most frequent diagnosis in adults was "palliative cancer" (25.8%), followed by "others". In children it was "motility alterations" with 6 cases (17.6%), Hirschsprung's disease and necrotising enterocolitis, both with 5 children (14.7%). The first indication was short bowel syndrome in both children (64.7%) and adults (37.3%), followed by intestinal obstruction in 28.6% adults and 14.7% in children. The most frequently used type of catheter was tunnelled in both children (70.6%) and adults (37.9%). The most frequent complication in adults was infection related to the catheter, which presented a rate of 0.48 infections / 1,000 days of NPD. During this period, 71 episodes ended in adults and the main cause was death (57.7%) followed by resuming the oral route (31%).Conclusions: There is a progressive increase of centers and professional collaborators in the registry who report patients receiving parenteral nutrition at home. The main indications of HPN and the motive for ending have remained stable. [ABSTRACT FROM AUTHOR]

Published
2017
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47. [Severe diarrhoea due to autoimmune enteropathy: Treatment and outcomes].

Author

Lázaro de Lucas C, Tesouro Rodríguez L, Magallares García LN, Martínez-Ojinaga Nodal E, and Ramos Boluda E

Subjects
Child, Child, Preschool, Diarrhea etiology, Female, Humans, Infant, Male, Polyendocrinopathies, Autoimmune complications, Retrospective Studies, Severity of Illness Index, Treatment Outcome, Diarrhea drug therapy, Polyendocrinopathies, Autoimmune drug therapy
Published
2018
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48. [Management and prognosis of intestinal epithelial dysplasia].

Author

Tesouro Rodríguez L, Lázaro de Lucas C, Magallares García LN, Martínez-Ojinaga Nodal E, and Ramos Boluda E

Subjects
Child, Female, Humans, Male, Prognosis, Retrospective Studies, Diarrhea, Infantile diagnosis, Diarrhea, Infantile therapy, Malabsorption Syndromes diagnosis, Malabsorption Syndromes therapy
Published
2018
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49. [Home and Ambulatory Artificial Nutrition (NADYA) Group Report - Home parenteral nutrition in Spain, 2016].

Author

Wanden-Berghe Lozano C, Virgili Casas N, Ramos Boluda E, Cuerda Compés C, Moreno Villares JM, Pereira Cunill JL, Gómez Candela C, Burgos Peláez R, Penacho Lázaro MÁ, Pérez de la Cruz A, Álvarez Hernández J, Gonzalo Marín M, Matía Martín P, Martínez Faedo C, Sánchez Martos EÁ, Sanz Paris A, Campos Martín C, Martín Folgueras T, Martín Palmero MÁ, Martín Fontalba MLÁ, Luengo Pérez LM, Zugasti Murillo A, Martínez Ramírez MJ, Carabaña Pérez F, Martínez Costa C, Díaz Guardiola P, Tejera Pérez C, Parés Marimón RM, Irles Rocamora JA, Garde Orbaiz C, Ponce González MÁ, García Zafra MV, Sánchez Sánchez R, Urgeles Planella JR, Apezetxea Celaya A, Sánchez-Vilar Burdiel O, Joaquín Ortiz C, Suárez Llanos JP, Pintor de la Maza B, Leyes García P, Gil Martínez MC, Mauri Roca S, and Carrera Santaliestra MJ

Subjects
Adolescent, Adult, Aged, Aged, 80 and over, Ambulatory Care, Child, Child, Preschool, Female, Gastrointestinal Diseases epidemiology, Gastrointestinal Diseases therapy, Home Care Services, Humans, Infant, Male, Middle Aged, Registries, Spain, Young Adult, Parenteral Nutrition, Home statistics & numerical data
Abstract

Objective: To communicate HPN data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2016., Material and Methods: Descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2016 to December 31st, 2016., Results: There were 286 patients from 42 Spanish hospitals (54.2% women), 34 children and 252 adults, with 294 episodes, which represent a prevalence rate of 6.16 patients / million inhabitants / year 2016. The most frequent diagnosis in adults was "palliative cancer" (25.8%), followed by "others". In children it was "motility alterations" with 6 cases (17.6%), Hirschsprung's disease and necrotising enterocolitis, both with 5 children (14.7%). The first indication was short bowel syndrome in both children (64.7%) and adults (37.3%), followed by intestinal obstruction in 28.6% adults and 14.7% in children. The most frequently used type of catheter was tunnelled in both children (70.6%) and adults (37.9%). The most frequent complication in adults was infection related to the catheter, which presented a rate of 0.48 infections / 1,000 days of NPD. During this period, 71 episodes ended in adults and the main cause was death (57.7%) followed by resuming the oral route (31%)., Conclusions: There is a progressive increase of centers and professional collaborators in the registry who report patients receiving parenteral nutrition at home. The main indications of HPN and the motive for ending have remained stable.

Published
2017
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