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Introduction: Aim: to present the results of the Spanish home enteral nutrition (HEN) registry of the NADYA-SENPE group for the years 2018 and 2019. Material and methods: from January 1, 2018 to December 31, 2019 the home enteral nutrition registry was recorded, and afterwards a further descriptive and analytical analysis was done. Results: in 2018, 4756 active patients were registered and the prevalence was 101.79 patients per one million inhabitants; in 2019 there were 4633 patients with a prevalence of 98.51 patients per one million inhabitants. They originated in 46 hospitals: 51.3 % were male, and median age was 71.0 years in both periods. The most frequent diagnosis was a neurological disorder that presents with aphagia or severe dysphagia - 58.7 % and 58.2 %, respectively. The main cause of episode termination was death. A total of 116 pediatric patients were registered in 2018 and 115 in 2019. Females represented 57.8 % and 59.1 %, respectively, in each of the periods. Median age at the beginning of HEN was 5 and 7 months. The most commonly recordered diagnostic group (42.2 % and 42.6 %) was included within the other pathologies group, followed by neurological disorders that present with aphagia or severe dysphagia in 41.4 % and 41.7 % of children. The route of administration was gastrostomy in 46.6 % and 46.1 %, respectively, in each of the periods. Conclusions: the NED registry of the NADYA-SENPE group continues to operate uninterruptedly since its inception. The number of registered patients and the number of participating hospitals remained stable in the last biennium analyzed. [ABSTRACT FROM AUTHOR]

Introduction: 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. [ABSTRACT FROM AUTHOR]

Introduction: 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. [ABSTRACT FROM AUTHOR]

Introduction: Objective: to present the results of the Spanish home enteral nutrition (HEN) registry of the NADYA-SENPE group for the year 2016 and 2017. Material and methods: from January 1st 2016 to December 31st 2017, the HEN registry was recorded and afterwards a further descriptive and analytical analysis was done. Results: in 2016, 4,578 active patients were recorded and prevalence was 98.33 patients per one million inhabitants; in 2017, 4,777 patients were recorded, with a prevalence of 102.57 per one million inhabitants; 50.8% were males in 2016 and 50.5% in 2017. During the period 2016-17, median age was 71.5 years (IIQ 57-83), 1,558 HEN episodes were finished and the main cause was death (793 patients, 50.89%). Adult males were younger than females (65.3 vs. 73.3 years, p-value < 0.001). The most frequent diagnosis was the neurological disorder that presents with aphagia or severe dysphagia (59%). Nasogastric tube was the most frequent administration route (48.3%) and it is the most widely used in elderly patients (p < 0.001). One hundred and twenty-six pediatric patients were registered (57.1% females). Median age at the beginning of HEN in children was four months. "Other disorders" was the most recorded diagnostic group (41.3%), followed by the group of neurological disorder that presents with aphagia or severe dysphagia. Regarding children, 57.6% were fed through gastrostomy and the younger ones were fed through nasogastric tube (p-value 0.001). Conclusions: the number of patients in the registry, as well as the number of participating centers, is progressively increasing. The main characteristics of the patients have not changed. Despite the increase in diagnostic possibilities in the pediatric population, the classification within the group of "Other pathologies" is quite significant. [ABSTRACT FROM AUTHOR]

Aim: to communicate HPN data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2017.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, 2017 to December 31st, 2017.Results: 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%).Conclusions: 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. [ABSTRACT FROM AUTHOR]

Objetivo: Comunicar los datos del registro de Nutrición Parenteral Domiciliaria (NPD) del grupo de trabajo NADYA-SENPE de los años 2011 y 2012. Material y métodos: Recopilación de los datos del registro "on-line" introducidos por los colaboradores del grupo NADYA responsables del seguimiento de la NPD desde el 1 de enero de 2011 al 31 de diciembre de 2012 dividido por años naturales. Resultados: Año 2010: Se registraron 184 pacientes, procedentes de 29 hospitales, lo que representa una tasa de 3,98 pacientes/millón habitantes/año 2011, con 186 episodios de NPD. Durante el año 2012 se registraron 203 pacientes, procedentes de 29 hospitales, lo que representa una tasa de 4,39 pacientes/millón habitantes/año 2012, con un total de 211 episodios de NPD. Conclusiones: Se observa un aumento progresivo de los pacientes registrados respecto a años anteriores. El principal grupo patológico sigue siendo oncológico ocupando el primer lugar desde 2003. Aunque el registro NADYA es un registro consolidado y ha sido y es fuente imprescindible de información relevante para el conocimiento de los avances de la Nutrición Artificial Domiciliaria en nuestro país, queda un amplio margen para la mejora. En especial lo que hace referencia al registro de pacientes pediátricos y al registro de las complicaciones.

Objective: To describe the results of the home enteral nutrition (HEN) registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%). Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1%) during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route.

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]

Objective: To present the results of the Spanish home enteral nutrition (HEN) registry of the NADYA-SENPE group for the years 2014 and 2015. Methods: From January 1st 2014 to December 31st 2015 the HEN registry was recorded and afterwards a further descriptive and analytical analysis was done. Results: In 2014, 3749 patients were recorded, and 4202 in 2015; prevalence was 80.58 patients/one million inhabitants in Spain in 2014 and 90.51 in 2015. There were 49.9% females in 2014 and 50.3% in 2015. Median age was 73 years (IQI 59-83) in 2014 as well as in 2015. 684 episodes finished in 2014 and 631 in 2015, with death as the main cause, in 54.9% and 50.4%, respectively. The ones who were fed through nasogastric tube had a mean age higher than the ones fed by any other route (p-value < 0.001). Sisty-seven paediatric patients were recorded in 2014 (56.7% females) and 77 in 2015 (55.8% females). Median age at the beginning of HEN among children was 5 months in 2014 and 5 months in 2015. The main route of administration was gastrostomy, in 52.5% in 2014 and nasogastric tube in 50.8% in 2015. 7 episodes finished in 2014 and 13 in 2015, having death as the main cause (57.1% in 2014 and 38.5% in 2015). It was found that were younger children the ones who were mainly fed by nasogastric tubes (p-value 0.004 vs. 0.002). Among paediatric patients as well as adults, the main diagnosis leading to HEN was neurological disease which gives aphagia or severe dysphagia. Conclusions: There has been an increase in the number of patients in the registry as well as the participating centers and the number of patients per center, without any significant change in the characteristics of the patients other than longer duration of the episodes. [ABSTRACT FROM AUTHOR]

Objetivo: Evidenciar mediante un análisis DAFO-R realizado por consenso de expertos las características más acuciantes del registro de Nutrición Artificial Domiciliaria y Ambulatoria. Material y método: Análisis DAFO-R por consenso de expertos. Se solicitó la participación de los miembros del grupo NADYA activos en los últimos 5 años bajo la premisa de estructurar el DAFO-R sobre las características del registro NADYA desde su inicio. Resultados: Han participado 18 expertos de diferentes hospitales de la geografía española. El análisis interno se inclina positivamente presentando al registro con recursos importantes. En el análisis externo no son numerosas las amenazas, hay factores de gran potencia, "la voluntariedad del registro" y la "dependencia externa de financiación". Las oportunidades identificadas son importantes. Las recomendaciones se dirigen a la estabilización del sistema disminuyendo las amenazas como foco principal de las estrategias a desarrollar al mismo tiempo que se debe potenciar los puntos identificados en oportunidades y fortalezas. Conclusiones: El registro NADYA se muestra en el análisis con gran potencialidad de mejora. Las recomendaciones propuestas deberán estructurarse para continuar la tendencia de desarrollo y perfeccionamiento de la calidad que ha caracterizado al registro NADYA desde su inicio.Objective: To evidence by means of a SWOT-R analysis performed by an expert consensus the most worrying characteristics of the register on Home-based and Outpatient Artificial Nutrition. Material and methods: SWOT-R analysis with expert consensus. We requested the participation of the active members of the NADYA group within the last 5 years with the premise of structuring the SWOT-R based on the characteristics of the NADYA registry from its beginning. Results: 18 experts from hospitals all over Spain have participated. The internal analysis seems to be positive, presenting the registry as having important resources. The external analysis did not show a great number of threats, there are very potent factors, "the voluntariness" of the registry and the "dependence on external financing". The opportunities identified are important. The recommendations are aimed at stabilizing the system by decreasing the threats as one of the main focus of the strategies to develop as well as promoting the items identified as opportunities and strengths. Conclusions: The analysis shows that the NADYA register shows a big potentiality for improvement. The proposed recommendations should be structured in order to stay on the track of development and quality improvement that has characterized the NADYA register from the beginning.

Objetivo: Describir las características de la Nutrición Enteral Domiciliaria (NED) en España, registrada por el grupo NADYA-SENPE durante el año 2009. Material y métodos: Recopilación y análisis descriptivo de los datos del registro de NED del grupo NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2009. Resultados: Se registraron 6.540 pacientes, 5,11% más que en el año anterior y 6.649 episodios de NED (3.135 en mujeres, 47,93%) pertenecientes a 32 centros hospitalarios. Siendo 6.238 (95,38%) mayores de 14 años. La edad media en los menores de 14 años fue de 3,67 ± 2,86 y de 72,10 ± 16,89 en los mayores de 14 años. La enfermedad de base que se registró con más frecuencia fue la neurológica en 2.732 (41,77%) ocasiones, seguida de la neoplasia en 1838; 28,10%. La vía de acceso se registró en 1.123 (17,17%) de los episodios, siendo más frecuente la administración por sonda nasogástrica 562 (50,04%). El tiempo medio de tratamiento nutricional fue de 323 días (10,77 meses). Finalizaron 606 episodios de NED, siendo el motivo más frecuentes el fallecimiento del enfermo, lo que aconteció en 295 (48,68%) ocasiones y el paso a alimentación oral en 219 (36,14%). Los pacientes mantenían una actividad normal en 2162 episodios de NED (32,55%) y en 2468 (37,13%) hacían vida "cama-sillón". El grado de dependencia fue "total" en 2598 (39,07%) de los episodios registrado. El suministro de la fórmula nutricional se realizó desde el hospital en 4.183 (62,91%) casos y por la farmacia de referencia en 2.262 (el 34,02%) y el material fungible se suministró desde el hospital en 3.531 (53,11%) de los casos. Conclusiones: El número de pacientes con NED registrados es superior al del año 2008, continuando con el incremento progresivo desde el inicio del registro. Las características de los mismos mantiene el mismo perfil que en años anteriores con pequeñas variaciones.Objective: To describe the Home Enteral Nutrition Characteristics (HEN) recorded by the group NADYA-SENPE during 2009. Material and method: collection and analysis of the data voluntary recorded in the HEN registry from the NADYA-SENPE group from January 1st to December 31st. Results: 6.540 HEN patients were registered, 5.11% more than the previous year and 6,649 episodes (3,135 in women, 47,93%) from 32 different hospitals. 6,238 of them (95,38%) were over 14 years. The mean age of the patients under 14 yr was 3,67 ± 2,86 and it was 72,10 ± 16,89 in those over 14 yr group. The base illness registered more frequently was the neurological disorders in 2,732 (41,77%) patients, followed by cancer patients in 1,838; 28,10%. The enteral access route was registered in 1,123 (17,17%) of the episodes, being more frequent the administration by nasogastric tube 562 (50,04%). The mean length of nutritional treatment by episode was 323 days (10,77 months). 606 episodes of HEN ended, being the principal reasons for discontinuing treatment the patient death in 295 (48,68%) occasions. The transition to oral feeding occurred in 219 (36,14%) cases. Patients maintained normal activity in 2162 (32,55%) HEN episodes and 2,468 (37,13%) cases were living "bed-couch". The level of dependence was "total" in 2,598 (39,07%) of the episodes recorded. The nutritional formula was provided by the hospital in 4,183 (62,91%) cases and by the reference pharmacy in 2,262 (el 34,02%). Consumables were provided by the hospital in 3,531 (53,11%) cases. Conclusions: The number of HEN patients recorded increased from the year 2008, continuing the gradual growth increase since the start of registration. The characteristics of the patients remain in the same profile as in previous years.

Objetivo: Exponer los resultados del registro de nutrición enteral domiciliaria (NED) del año 2008 del Grupo NADYA-SENPE. Material y métodos: Se recopilan los datos introducidosen el registro desde el 1 de enero al 31 de diciembre de 2008. Resultados: Durante este periodo se registraron 6.206 pacientes (51% varones) y un total de 6.279 episodios de NED en 31 hospitales españoles. El 95% de los enfermos tenía más de 14 años. La edad media (± desviación estándar) de los menores de 14 años fue de 4,83 años (± 3,29) y la de los mayores de 70,75 años (± 18,14). Las enfermedades que con más frecuencia motivaron el uso de la NED fueron la patología neurológica (39%) y las neoplasias (27%). La vía de administración más utilizada fue la oral (43,4%), seguida de la sonda nasoenteral (40,4%) y la gastrostomía (14,7%). La duración media del soporte fue de 305,36 días (10 meses). Los motivos más frecuentes de la finalización del tratamiento fueron la muerte del paciente (43%) y el paso a vía oral (40%). El nivel de actividad de los pacientes fue normal sólo en el 33% de ellos y limitado en diverso grado en el resto. La mayoría requería ayuda (parcial 25% o total 38%). El suministro de la fórmula de NE se realizó mayoritariamente en el Hospital (65%) y en el 32 % se efectuó a través de las oficinas de farmacia. La provisión del material fungible se efectuó a través de los hospitales en el 82,4% de los casos y en atención primaria en el 17,2%. Conclusiones: El número de pacientes registrados y su edad aumentan en relación con los años anteriores, pero se mantiene con pequeñas variaciones el resto de las variables analizadas. El aumento de la duración del soporte puede estar artefactado por el tipo de cumplimentación del registro.Aim: To present the results of the Spanish home enteral nutrition (HEN) registry of the year 2008 from the NADYA-SENPE group. Material and methods: We recorded the HEN registry data from January 1st to December 31st 2008. Results: The number of patients registered in this period was 6206 (51% male) with up to 6,279 episodes of HEN, from 31 Spanish hospitals. Most of the patients (95%) were older than 14 yr. Mean age was 4.83 ± 3.29 yr in the children group, and 70.75 ± 18.14 yr in the adult group (older than 14 yr). Neurological disorders (39%) and cancer (27%) were the two most prevalent diagnoses. The oral route was the most frequently used (43,4%), followed by nasogastric tube (40,4%), and gastrostomy tube (14,7%). Mean length of treatment was 305,36 days (10 months). The principal reasons for discontinuing treatment were death (43%) and progress to oral diet (40%). Only 33% of the patients had a normal activity level, being limited in different grades in the rest of the patients. Most of the patients required partial (25%) or total help (38%). The enteral formula was provided by the hospital in 65% of the cases and by private pharmacies in 32%. The disposables were provided by the hospital (82,4%) and primary care services (17,2%). Conclusions: The number and the age of the patients registered have increased comparing to previous years, with little variations in the rest of analyzed variables. The increase in the length of treatment could reflect misreporting of the weaning process in the registry.

Introduction: The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Methods: Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. Results: A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. Conclusions: The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.Introducción: Los registros nutricionales son bases de datos a través de los cuales obtenemos la información para conocer los aspectos referentes a la nutrición de las poblaciones. Este tipo de registros no son frecuentes, aunque las principales sociedades de nutrición del mundo los tienen. La mayor representación en nuestro país la tenemos a partir del grupo NADYA (Nutrición Artificial Domiciliaria y Ambulatoria). Objetivo: Determinar mediante revisión crítica la producción científica existente en las bases de datos internacionales sobre los registros de soporte nutricional artificial. Métodos: Estudio descriptivo transversal de los resultados de las búsquedas bibliográficas efectuadas en diversas bases de datos. Resultados: Se han encontrado 18 artículos relacionados con los registros nutricionales. En estos artículos se han identificado 9 registros de soporte nutricional. Conclusión: Los registros encontrados, no son entre ellos homogéneos, presenta limitaciones importantes para extrapolar y comparar las diferentes poblaciones registradas.

La importancia de los registros está determinada por la calidad de los datos que los componen, conocer los criterios de calidad de los datos recogidos, su codificación, trascripción y análisis son componentes básicos para que cualquier registro sirva a los propósitos para los que fue diseñado. Estas premisas aplicadas a un registro de nutrición domiciliaria proporcionan una información capaz de cumplir los objetivos de los investigadores. En España el registro del grupo NADYA de la Sociedad Española de Nutrición Enteral y Parenteral trata de cuantificar la dimensión de la Nutrición Artificial Domiciliaria, tipificar la distribución por patologías, vías y modos de infusión además de otras variables. De él se deduce que la Nutrición Parenteral está en la actualidad infrautilizada, quizá por la carencia de estructuras capaces de mantener la asistencia en el domicilio del paciente. Sin embargo, la Nutrición Enteral por sonda, es una modalidad en aumento, que supone una reducción importante de los costes hospitalarios, pero lo que es más importante, representa una mejoría de la calidad de vida de los pacientes a los que se le aplica y también de la de sus familias.The importance of the registries is determined by its data. In order for a registry to meet its objectives quality in codification, transcription and analysis is essential. These premises applied to a home nutrition registry give an information able to meet all the researchers' targets. The NADYA Group registry of the Spanish Society of Parenteral and Enteral Nutrition in Spain tries to measure home artificial nutrition, its indications, methods and ways of administration and other variables. From their studies we may conclude that Parenteral Nutrition is underutilized at present, probably due to a lack of supporting structures able to meet all the needs of home patients. However, tube enteral nutrition is increasing, which represents a reduction in hospital costs and, more important represents an improvement of the patients quality of life and, in turn, also of their relatives.

Aim: To communicate the results of the Spanish Home Parenteral Nutrition (HEN) registry of the NADYA-SENPE group for the year 2015. Material and methods: Data was recorded online by NADYA group collaborators that were responsible of the HPN follow-up from 1st January to 31st December 2015. Results: Two hundred and thirty-six patients with 243 episodes of NPD were recorded from 40 hospitals. This represents a rate of 5.08 patients/million habitants for 2015. The most frequent pathology in adults was other (26.3%) followed by palliative oncological (21.6%). The most common complication was catheter-related sepsis which presented a rate of 0.53 infections/1,000 days of HPN. Sixty-four episodes were finished; the main cause was death (43.7%) and resuming to oral via (32.8%). Conclusions: we find increasing centers and professional partners, responding to the progressively more patients with parenteral nutrition support at home. The main indications for the establishment of NPD and causes termination of treatment remain stable. [ABSTRACT FROM AUTHOR]

Aim: to communicate the results of the Spanish Home Parenteral Nutrition (HEN) registry of the NADYASENPE group for the year 2014.Material and Methods: data was recorded online by NADYA group collaborators that were responsible of the HPN follow-up from 1st January to 31st December 2014.Results: a total of 220 patients and 229 episodes of HPN were registered from 37 hospitals that represents a rate of 4.7 patients/million habitants/year 2014. The most frequent disease in adults was other diseases (23.3%), neoplasm (20.4%) followed by radical active neoplasm (11.8%) and mesenteric ischemia (10.9%). The most frequent diagnosis for children were the congenital intestinal disorders (33.3%) followed by traumatic short bowel and other diagnosis.Conclusions: the number of participating centers and registered patients increased progressively respect to preceding years. We consider that the HPN should be regulated by the Sanitary Administration within the framework of the National Health Service Interregional Council. And its inclusion in the portfolio of health services of the different Autonomous Comunities would be beneficial for patients and professionals. [ABSTRACT FROM AUTHOR]

Aim: to present the results of the Spanish home enteral nutrition (HEN) registry of the NADYA-SENPE group for the year 2013. Material and methods: from January 1st to December 31st 2013 data was recorded for the HEN registry and further descriptive and analytical analysis was done. Results: in this period 3 223 patients (50.6% men) and a total of 3 272 episodes of HEN were registered in 33 Spanish hospitals. The rate of prevalence was of 67,11 patients/million habitants/ year 2013. A high percentage of patients (98,24%) were older than 14 years. Adult's mean age was 69,14 years (sd 17,64) and men were younger than women p-value <0,001. Children mean age was 2,38 years (sd 4,35). The most frequent indication for HEN was neurological disease for children (49,1%). and for adults (60,6%). Gastrostomy was the most used administration route for children (51%) while younger ones were fed with NGT (p-value 0,003) also older adults (48%) were fed with this type of tube (p-value <0,001). The most frequent reasons for cessation of treatment was death, 44,4% were children and 54,7% were adults. Conclusions: The number of patients and hospitals registered increased in the last years while the other variables maintain steady. The registry developed allowing contrasted analysis of data in order to get more information. [ABSTRACT FROM AUTHOR]

Aim: to communicate the results of the Spanish Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE group for the year 2013. Material and methods: data was recorded online by NADYA group collaborators that were responsible of the HPN follow-up from 1st January to 31st December 2013. Results: a total of 197 patients and 202 episodes of HPN were registered from 35 hospitals that represents a rate of 4,22 patients/million habitants/year 2013. The median age was 53 years (IQR 40 – 64) for 189 adult patients and 7 months (IQR 6 – 35,5) for children. The most frequent disease in adults was neoplasm (30,7%) followed by other diseases (20,1%) and mesenteric ischemia (12,7%). Short bowel syndrome and intestinal obstruction (25,9%) were in 35.7% cases the indications for HPN. The most frequent diagnosis for children were the congenital intestinal disorders and other diagnosis, both with a (37,5%) and short bowel syndrome and intestinal obstruction were the indication for treatment, each was present in 50% of the sample. Tunneled catheters (50%) and subcutaneous reservoirs (27,7%) were frequently used. The septic complications related with catheter were commonly frequent with a rate of 0.74 infections/1000 HPN days. HPN duration presented a median of 1,69 days. A total of 86 episodes finalized during the year, death was the principal reason (45%), followed by “resumed oral via" (43,75%) while it happened inversely for children, 66,7% of them resumed oral via and 16,7% deceased. Fifteen per cent were considered for intestinal transplant, children were proportionally candidates, p-value 0.002. Conclusions: the number of participating centers and registered patients increased progressively respect to preceding years. Since 2003 Neoplasm is still being the principal pathological group. Death is adult's principal reason for finalizing HPN and “resuming oral via" for children. Despite that NADYA registry is consolidate as a essential source of relevant information about the advances in Home Artificial Nutrition in our country, currently is in an improvement process of the available information about patients characteristics with a special emphasis on children even though they still being a minority group. [ABSTRACT FROM AUTHOR]

Objective: To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the years 2011 and 2012. Methodology: We compiled the data from the on-line registry introduced by reviewers of NADYA group responsible for monitoring of NPD introduced by since January 1, 2011 to december 31, 2012. Included fields were: age, sex, diagnosis and reason for HPN, access path, complications, beginning and end dates, complementary oral or enteral nutrition, activity level, autonomy degree, product and fungible material supply, withdrawal reason and intestinal transplant indication. Results: Year 2010: 184 patients from 29 hospitals , representing a rate of 3.98 patients/million inhabitants/ year 2011, with 186 episodes were recorded NPD . During 2012, 203 patients from 29 hospitals , representing a rate of 4.39 patients/million inhabitants/year 2012 , a total of 211 episodes were recorded NPD . Conclusions: We observe an increase in registered patients with respect to previous years.Neoplasia remains as the main pathology since 2003. Although NADYA is consolidated registry and has been indispensable source of information relevant to the understanding of the progress of Home Artificial Nutrition in our country, there is ample room for improvement. Especially that refers to the registration of pediatric patients and the registration of complications. [ABSTRACT FROM AUTHOR]

Objective: To describe the results of the home enteral nutrition (HEN) registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%). Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1%) during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route. [ABSTRACT FROM AUTHOR]

Objective: To evidence by means of a SWOT-R analysis performed by an expert consensus the most worrying characteristics of the register on Home-based and Outpatient Artificial Nutrition. Material and methods: SWOT-R analysis with expert consensus. We requested the participation of the active members of the NADYA group within the last 5 years with the premise of structuring the SWOT-R based on the characteristics of the NADYA registry from its beginning. Results: 18 experts from hospitals all over Spain have participated. The internal analysis seems to be positive, presenting the registry as having important resources. The external analysis did not show a great number of threats, there are very potent factors, "the voluntariness" of the registry and the "dependence on external financing". The opportunities identified are important. The recommendations are aimed at stabilizing the system by decreasing the threats as one of the main focus of the strategies to develop as well as promoting the items identified as opportunities and strengths. Conclusions: The analysis shows that the NADYA register shows a big potentiality for improvement. The proposed recommendations should be structured in order to stay on the track of development and quality improvement that has characterized the NADYA register from the beginning. [ABSTRACT FROM AUTHOR]

Objective: To describe the Home Enteral Nutrition Characteristics (HEN) recorded by the group NADYA-SENPE during 2009. Material and methods: collection and analysis of the data voluntary recorded in the HEN registry from the NADYA-SENPE group from January 1st to December 31st. Results: 6.540 HEN patients were registered, 5.11% more than the previous year and 6,649 episodes (3,135 in women, 47,93%) from 32 different hospitals. 6,238 of them (95,38%) were over 14 years. The mean age of the patients under 14 yr was 3,67 ± 2,86 and it was 72,10 ± 16,89 in those over 14 yr group. The base illness registered more frequently was the neurological disorders in 2,732 (41,77%) patients, followed by cancer patients in 1,838; 28,10%. The enteral access route was registered in 1,123 (17,17%) of the episodes, being more frequent the administration by nasogastric tube 562 (50,04%). The mean length of nutritional treatment by episode was 323 days (10,77 months). 606 episodes of HEN ended, being the principal reasons for discontinuing treatment the patient death in 295 (48,68%) occasions. The transition to oral feeding occurred in 219 (36,14%) cases. Patients maintained normal activity in 2162 (32,55%) HEN episodes and 2,468 (37,13%) cases were living "bedcouch". The level of dependence was "total" in 2,598 (39,07%) of the episodes recorded. The nutritional formula was provided by the hospital in 4,183 (62,91%) cases and by the reference pharmacy in 2,262 (el 34,02%). Consumables were provided by the hospital in 3,531 (53,11%) cases. Conclusions: The number of HEN patients recorded increased from the year 2008, continuing the gradual growth increase since the start of registration. The characteristics of the patients remain in the same profile as in previous years. [ABSTRACT FROM AUTHOR]

Aim: To present the results of the Spanish home enteral nutrition (HEN) registry of the year 2008 from the NADYA-SENPE group. Material and methods: We recorded the HEN registry data from January 1st to December 31st 2008. Results: The number of patients registered in this period was 6206 (51% male) with up to 6,279 episodes of HEN, from 31 Spanish hospitals. Most of the patients (95%) were older than 14 yr. Mean age was 4.83 ± 3.29 yr in the children group, and 70.75 ± 18.14 yr in the adult group (older than 14 yr). Neurological disorders (39%) and cancer (27%) were the two most prevalent diagnoses. The oral route was the most frequently used (43,4%), followed by nasogastric tube (40,4%), and gastrostomy tube (14,7%). Mean length of treatment was 305,36 days (10 months). The principal reasons for discontinuing treatment were death (43%) and progress to oral diet (40%). Only 33% of the patients had a normal activity level, being limited in different grades in the rest of the patients. Most of the patients required partial (25%) or total help (38%). The enteral formula was provided by the hospital in 65% of the cases and by private pharmacies in 32%. The disposables were provided by the hospital (82,4%) and primary care services (17,2%). Conclusions: The number and the age of the patients registered have increased comparing to previous years, with little variations in the rest of analyzed variables. The increase in the length of treatment could reflect misreporting of the weaning process in the registry. [ABSTRACT FROM AUTHOR]

Introduction: The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Methods: Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. Results: A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. Conclusions: The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis. [ABSTRACT FROM AUTHOR]

The importance of the registries is determined by its data. In order for a registry to meet its objectives quality in codification, transcription and analysis is essential . These premises applied to a home nutrition registry give an information able to meet all the researchers' targets. The NADYA Group registry of the Spanish Society of Parenteral and Enteral Nutrition in Spain tries to measure home artificial nutrition, its indications, methods and ways of administration and other variables. From their studies we may conclude that Parenteral Nutrition is under utilized at present, probably due to a lack of supporting structures able to meet all the needs of home patients. However, tube enteral nutrition is increasing, which represents a reduction in hospital costs and, more important represents an improvement of the patients quality of life and, in turn, also of their relatives. [ABSTRACT FROM AUTHOR]

Objetivo: Exponer los resultados del registro de nutrición enteral domiciliaria (NED) del año 2008 del Grupo NADYA-SENPE. Material y métodos: Se recopilan los datos introducidosen el registro desde el 1 de enero al 31 de diciembre de 2008. Resultados: Durante este periodo se registraron 6.206 pacientes (51% varones) y un total de 6.279 episodios de NED en 31 hospitales españoles. El 95% de los enfermos tenía más de 14 años. La edad media (± desviación estándar) de los menores de 14 años fue de 4,83 años (± 3,29) y la de los mayores de 70,75 años (± 18,14). Las enfermedades que con más frecuencia motivaron el uso de la NED fueron la patología neurológica (39%) y las neoplasias (27%). La vía de administración más utilizada fue la oral (43,4%), seguida de la sonda nasoenteral (40,4%) y la gastrostomía (14,7%). La duración media del soporte fue de 305,36 días (10 meses). Los motivos más frecuentes de la finalización del tratamiento fueron la muerte del paciente (43%) y el paso a vía oral (40%). El nivel de actividad de los pacientes fue normal sólo en el 33% de ellos y limitado en diverso grado en el resto. La mayoría requería ayuda (parcial 25% o total 38%). El suministro de la fórmula de NE se realizó mayoritariamente en el Hospital (65%) y en el 32 % se efectuó a través de las oficinas de farmacia. La provisión del material fungible se efectuó a través de los hospitales en el 82,4% de los casos y en atención primaria en el 17,2%. Conclusiones: El número de pacientes registrados y su edad aumentan en relación con los años anteriores, pero se mantiene con pequeñas variaciones el resto de las variables analizadas. El aumento de la duración del soporte puede estar artefactado por el tipo de cumplimentación del registro.