Trend Observations in Home Parenteral Nutrition. Prevalence, Hospitalizations and Costs: Results from a Nationwide Analysis of Health Care Provider Data.

BACKGROUND: The population of patients on home parenteral nutrition (HPN) worldwide is growing. Since only a few counties provide data from national registries long-term observations are valuable to address this specific area of nutrition support. This study is a nationwide analysis determining the trends in the epidemiology of HPN (prevalence, age distribution, death rates), indications for HPN, causes for hospitalizations, and cost analysis of HPN reimbursement in Poland between 2010-2020. METHODS: A retrospective analysis of data obtained from the national health fund (NHF) of Poland on adult patients on HPN. RESULTS: The prevalence of adult patients on HPN in Poland in 2020 was 53.26 per million citizens with a 2.99-fold increase and a growing trend observed from 2010. Significant decrease in the percentage of patients between 18-34, 45-54 and an increase in patients between 65-74 and patients over 75 years old was observed. Trend analysis showed an increase in new patients between 65-74 and a decrease between 35-54. Malnutrition (34.28%), postprocedural disorders of the GI tract (19.61%), intestinal malabsorption/other intestinal diseases (20.41%) and GI obstruction due to cancer (17.36% as primary and 23.16% as secondary diagnosis) were mostly reported as the primary indications for HPN. Cancer patients were mostly gastric, ovarian and colon cancer (34.74%, 17.83% and 12.3%). HPN and total health cost reimbursement increase was 2.6 and 2.57-fold respectively. Costs of HPN and total health care costs in 2020 per patient were € 10,015 and € 16,038, respectively. Overall death risk rate during the first year of nutrition was 0.59 with a significant increase in the observation period p-trend < 0.004. A significant increase in the death rate was observed in patients above 75 years old (estimate 1.629, p-trend < 0.030). Cancer, infection, malnutrition and GI symptoms were the most common indications for hospitalizations of HPN patients. The rate of patients with a maximal length of HPN of 5 months in 2010 was 54.9% and was growing up to 78.1% in 2020. CONCLUSIONS: The prevalence of HPN in Poland is growing. Trends of age distribution show increasing numbers of patients with more advanced age and shorter survival. Costs of HPN are comparable with other European data.

Outcome of adult patients receiving parenteral support at home: 36 years' experience at a tertiary referral centre.

BACKGROUND AND AIMS: Patients with intestinal failure often need long-term home parenteral support (PS). We aimed to determine how the underlying diagnosis, complications and survival had changed over the last 36 years in the UK's largest IF centre. METHODS: 978 adult home PS patient records were analysed from January 1979 until October 2016. The age, sex, underlying aetiology, complications and survival was compared over 5-year periods. RESULTS: Pre-1990 to 2011-2016, numbers increased from 29 to 451, the mean age of patients increased from 31 ± 16.5 to 52 ± 17.6 years. The percentage of patients with IF due to surgical complications increased (3.4%-28.8%, p < 0.001)), while those with inflammatory bowel disease decreased (37.9%-22.6%, p < 0.001). Complication of home PS reduced: catheter related blood stream infections (CRBSI) 71.4% to 42,2%, CVC thrombosis 34.5%-5.3%. Intestinal failure associated liver disease (IFLAD) 10.3%-1.8%. Patients with dysmotility, scleroderma and a congenital aetiology had the highest incidence of CRBSI and CVC Thrombosis. Overall survival was greater pre-1995 [HR 0.2-0.4 (p = 0.02)] most likely associated with an increase in mean age. Survival for patients without malignancy was 90%, 66%, 55%, 45%, 33% and 25% at 1,5, 10, 15, 20 and 30 years respectively. Multivariate analysis demonstrated a relationship between survival and age of starting home PS; type of home PS; presence or absence of the colon in continuity; and underlying aetiology. CONCLUSION: Demand for home PS is increasing in particular for advanced malignancy, post-surgical complications and older more co-morbid patients. Complications of home PS are reducing over the last 30 years and 10-year survival for non-malignant aetiologies improving. Survival and changes in aetiology in intestinal failure.

Pediatric Home Parenteral Nutrition in France: A six years national survey.

BACKGROUND AND AIMS: Home Parenteral Nutrition (HPN) is the cornerstone management for children suffering from chronic intestinal failure (CIF). In France, HPN is organized from a network of 7 certified centers located in University Hospitals spread across the national territory. This study aims to review the data involving children on HPN over a 6-years period in France to outline the global and continuous improvement in care. PATIENTS AND METHODS: This cross-sectional study included all children enrolled in any of the 7 French HPN certified centers from January 1st, 2014 to December 31st, 2019. Data was recorded from annual databases provided by each center regarding: age at inclusion, indication and duration of HPN, type of intravenous lipid emulsion (ILE), outcome [PN weaning off, transfer to adult center, death, intestinal transplantation (ITx)], rate of catheter-related bloodstream infections (CRSBIs) for 1000 days of HPN, Taurolidine lock procedure (TLP) use and prevalence of cholestasis defined as conjugated bilirubin ≥20 µmol/l. RESULTS: The number of patients increased by 43.6% from 268 in 2014 to 385 in 2019. According to the year of follow up, the indications for HPN were short bowel syndrome (SBS) (42.3-46.6%), congenital enteropathies (CE) (18.5-22.8%), chronic intestinal pseudo-obstruction syndrome (CIPOS) (13.0-16.3%), long segment Hirschsprung's disease (LSHD) (9.7-13.3%), Crohn's disease (CD) (1.6-2.6%) and other non-primary digestive diseases (NPDD) such as immune deficiency, cancer or metabolic disease (4.0-9.2%). The median age at discharge on HPN decreased from 11.7 months in 2014 to 8.3 months in 2019 (p < .001). By December 31st, 2019, 44.8% of children had left the HPN program after a median duration ranging between 39.9 and 66.4 months. Among these patients, 192 (74.2%) were weaned off PN (94.7% SBS), 41 (15.8%) were transferred to adult centers for CIPOS (42%), SBS (31%) or CE (27%), 21 died (8.1%) - mostly in relation to cancer or immune deficiency - and 5 were transplanted (1.9%): 4 underwent combined liver-intestine transplantation for LSHD (n = 2), SBS, CE and one multivisceral Tx for CIPOS. The use of a composite fish-oil based ILE increased from 67.4% in 2014 to 88.3% in 2019 (p < 0.001). CRBSIs dropped from 1.04 CRSBIs per 1000 days HPN in 2014 to 0.61 in 2019 (p < 0.001) while meantime, the percentage of children receiving TLP increased from 29.4% to 63.0% (p < 0.001). The prevalence of cholestasis (conjugated bilirubin ≥ 20 µmol/l) was low and stable between 4.1 and 5.9% of children during the study period. CONCLUSION: In France, the number of children enrolled in a HPN program continuously increased over a 6 years period. SBS is the leading cause of CIF requiring HPN. The rate of CRBSIs dropped dramatically as the use of TLP increased. Mortality rate was low and mainly in relation to the underlying disease (cancer, immune deficiency). Cholestasis and intestinal Tx remained very rare.

Proactive Risk Assessment through FMEA of Home Parenteral Nutrition Care Processes: A Survey Analysis.

BACKGROUND: Home Parenteral Nutrition (HPN) is a lifesaving clinical care process. However, undetected hazards and vulnerabilities in care transitions from hospital to community care may pose risk to patient's safety. Avoidable complications and adverse events may hinder the benefits of treatment. OBJECTIVE: The analysis carried out aims at framing through Human Factors and Ergonomics (HF/E) the critical issues for patient safety related to clinical care practices for HPN in healthcare organization. METHODS: We present the results of a proactive risk assessment analysis based on the FMEA methodology (Failure Mode and Effects Analysis) carried out in three different areas of the regional health care system of Tuscany, Italy. The clinical risk management and patient safety unit assessed the risk perception of Healthcare Workers (HWs) in regard to patient safety and situational awareness throughout the HPN patient journey. RESULTS: The analysis revealed heterogeneity in the Risk Priority Index (RPI) expressed by HWs. A lower RPI is associated with a HPN process that deploys in continuity between hospital care and community care. A higher RPI is associated with a quality and safety improvement process that is still ongoing. We also observed HWs expressing low RPI in the areas of the region where HPN has a hospital- focused approach and has limited adherence to patient safety requirements. Low RPI for HPN process may relate both to extensively deployed continuity of care and to jeopardized awareness on HPN phases and coordination. The analysis carried out enabled the definition of a common HPN workflow used as reference schema allowing for the definition of a set of recommendations for improving the quality and safety of the care processes. Moreover, the outcome of the proactive risk assessment laid the groundwork for the advancement of the patient safety regional requirements. CONCLUSION: The analysis had the role of promoting the contextualization of the culture of quality and safety within the HPN process resulting in an improved awareness of the criticalities and the role of nutrition units throughout the care process.

Programa de nutrición parenteral domiciliaria: 32 años de experiencia clínica / A home parental nutrition program: 32 years of clinical experience

Introducción: la nutrición parenteral domiciliaria (NPD) es una técnica compleja que implica un seguimiento multidisciplinar. Objetivos: análisis descriptivo de todos los pacientes incluidos en el programa de NPD. Métodos: estudio retrospectivo de los pacientes con NPD entre 1985 y 2017 en nuestro centro, un hospital universitario terciario. Resultados: analizamos 61 pacientes (32 hombres, edad media: 51,2 años). La patología de base más frecuente fue la neoplasia (32,8%), siendo el síndrome de intestino corto (SIC) la principal indicación de NPD (70,5%). Recibieron NPD parcial 45 pacientes y total, 16. El tipo de catéter más empleado fue el venoso tunelizado. Veinte pacientes la suspendieron por ingesta oral completa (19 los primeros cinco años), 26 por exitus (18 los primeros cinco años) y 15 la mantienen. La neoplasia fue la causa de muerte más frecuente (46,2%) y en un 15,4%, la hepatopatía asociada a NPD. La duración mediana de la NPD fue de 25 meses (1-394), siendo en 24 pacientes mayor a cinco años (ocho fallecidos, solo uno de causa oncológica no relacionada con la NPD). Un 54% presentaron infecciones de catéter, aislándose Staphylococcus coagulasa negativo en el 55,2%, con una tasa de infección de 1,04 por 1,000 días de cateterización. Conclusiones: la NPD es una estrategia terapéutica útil en el fracaso intestinal. El SIC es la indicación más frecuente en nuestra casuística. La patología de base, como la neoplasia, determinará el pronóstico. La infección por catéter es la complicación más frecuente, por lo que es necesario reforzar la educación sanitaria y la profilaxis antiséptica

Introduction: home parenteral nutrition (NPD) is a complex technique that involves multidisciplinary follow-up. Objectives: descriptive analysis of all patients included in the NPD program. Methods: retrospective study of patients with NPD between 1985 and 2017 in our center, a tertiary university hospital. Results: we analyzed 61 patients (32 men, mean age: 51.2 years). The most common underlying pathology was neoplasia (32.8%), with short bowel syndrome (SIC) being the main indication of NPD (70.5%). Forty-five patients received partial NPD and 16 total. The tunnelled vein catheter was the most common venous access used. 20 patients suspended it for complete oral intake (19 the first 5 years), 26 were deceased (18 the first 5 years) and 15 maintain it. Neoplasia was the most frequent cause of death (46.2%) and in 15.4% liver disease was associated with NPD. The median duration of NPD was 25 months [1-394]; being in 24 patients longer than 5 years (8 dead, only 1 for oncologic cause not related to the NPD). Fifty-four per cent had catheter infections, being isolated 55.2% Staphylococcus coagulase negative, with an infection rate of 1.04 per 1000 days of catheterization. Conclusions: NPD is a useful therapeutic strategy in intestinal failure. The SIC is the most frequent indication in our case study. The underlying pathology, such as neoplasia, will determine the prognosis. Catheter infection is the more frequent complication, so it is necessary to strengthen health education and antiseptic prophylaxis

[Spanish home enteral nutrition registry of the year 2016 and 2017 from the NADYA-SENPE Group]. / Registro del grupo nadya-senpe de nutrición enteral domiciliaria en españa; años 2016 y 2017.

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.

INTRODUCCIÓN: Objetivo: exponer los resultados del registro de nutrición enteral domiciliaria (NED) de los años 2016 y 2017 del Grupo NADYA-SENPE. Material y métodos: se recopilaron los pacientes introducidos en el registro del 1 de enero al 31 de diciembre de 2016 y la mismas fechas de 2017 para proceder al análisis descriptivo y analítico de los datos. Resultados: en el año 2016 se obtuvieron 4.578 pacientes activos (prevalencia = 98,33 pacientes/millón de habitantes) y en 2017 fueron 4.777 (prevalencia = 102,57). Por sexos, hubo un 50,8% de varones en 2016 y un 50,5% en 2017. En el periodo 2016-17, la edad mediana fue de 71,5 años (IIQ 57-83); asimismo, finalizaron 1.558 episodios de NED y la causa principal fue el fallecimiento (793 pacientes, 50,89%). Los varones adultos fueron más jóvenes que las mujeres (65,3 vs. 73,3 años, p-valor < 0,001) y el diagnóstico más frecuente fue la enfermedad neurológica que cursa con afagia o disfagia severa (59%). La sonda nasogástrica (SNG) fue la vía de acceso más utilizada (48,3%) y se observa, además, que esta es la vía que se utiliza en los pacientes más ancianos (p < 0,001). Se registraron 126 pacientes pediátricos (57,1% niñas). La edad mediana de inicio de la NED fue de cuatro meses. Otras patologías fue el grupo diagnóstico más registrado (41,3%), seguido por la enfermedad neurológica que cursa con afagia o disfagia severa. Se alimentaban a través de gastrostomía en el 57,6% de los casos. Se observó que los niños más pequeños eran los que se alimentaban preferentemente por SNG (p-valor 0,001). Conclusiones: el número de pacientes del registro, así como el número de centros participantes, se va incrementando progresivamente. Las principales características de los pacientes no han variado. A pesar del aumento de posibilidades diagnósticas en la población pediátrica, llama la atención la clasificación dentro del grupo de Otras patologías.

Registro del Grupo NADYA-SENPE de Nutrición Enteral Domiciliaria en España; años 2016 y 2017 / Spanish home enteral nutrition registry of the year 2016 and 2017 from the NADYA-SENPE Group

Objetivo: exponer los resultados del registro de nutrición enteral domiciliaria (NED) de los años 2016 y 2017 del Grupo NADYA-SENPE. Material y métodos: se recopilaron los pacientes introducidos en el registro del 1 de enero al 31 de diciembre de 2016 y la mismas fechas de 2017 para proceder al análisis descriptivo y analítico de los datos. Resultados: en el año 2016 se obtuvieron 4.578 pacientes activos (prevalencia = 98,33 pacientes/millón de habitantes) y en 2017 fueron 4.777 (prevalencia = 102,57). Por sexos, hubo un 50,8% de varones en 2016 y un 50,5% en 2017. En el periodo 2016-17, la edad mediana fue de 71,5 años (IIQ 57-83); asimismo, finalizaron 1.558 episodios de NED y la causa principal fue el fallecimiento (793 pacientes, 50,89%). Los varones adultos fueron más jóvenes que las mujeres (65,3 vs. 73,3 años, p-valor < 0,001) y el diagnóstico más frecuente fue la enfermedad neurológica que cursa con afagia o disfagia severa (59%). La sonda nasogástrica (SNG) fue la vía de acceso más utilizada (48,3%) y se observa, además, que esta es la vía que se utiliza en los pacientes más ancianos (p < 0,001). Se registraron 126 pacientes pediátricos (57,1% niñas). La edad mediana de inicio de la NED fue de cuatro meses. Otras patologías fue el grupo diagnóstico más registrado (41,3%), seguido por la enfermedad neurológica que cursa con afagia o disfagia severa. Se alimentaban a través de gastrostomía en el 57,6% de los casos. Se observó que los niños más pequeños eran los que se alimentaban preferentemente por SNG (p-valor 0,001). Conclusiones: el número de pacientes del registro, así como el número de centros participantes, se va incrementando progresivamente. Las principales características de los pacientes no han variado. A pesar del aumento de posibilidades diagnósticas en la población pediátrica, llama la atención la clasificación dentro del grupo de Otras patologías

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

Bioelectrical impedance analysis for monitoring cancer patients receiving chemotherapy and home parenteral nutrition.

BACKGROUND: Home parenteral nutrition (HPN) can improve survival, quality of life, nutritional and functional status in cancer patients. Bioelectrical impedance analysis (BIA) is a non-invasive, validated method to assess body composition. The objective of this prospective single-arm study was to investigate the impact of HPN in advanced cancer patients receiving chemotherapy assessed by BIA, clinical and laboratory measures. METHODS: Adult malnourished cancer outpatients with solid tumors receiving anticancer treatments who were candidates for daily HPN were enrolled. Patients were assessed at baseline (T0), 60 (T1) and 90 days (T2) after HPN start. Assessments included anthropometric and clinical-oncological characteristics, performance status, inflammatory response and Patient-Generated Subjective Global Assessment (PG-SGA). RESULTS: Sixty-five advanced cancer patients were enrolled. Median overall survival was 317 days. Body weight, BMI, oral calorie and protein intake increased over time (P < 0.01). At T2 the proportion of well-nourished patients, Karnofsky performance status and modified Glasgow prognostic score were improved (P < 0.01), total body water was reduced (P = 0.04), and fat mass increased (P = 0.04). Reactance, resistance and phase angle were significantly associated with survival at T0, T1, and T2, respectively. At T2, PG-SGA category A was a predictor of survival (P < 0.0001). CONCLUSIONS: After 90 days of HPN, patients experienced significantly improved nutritional status, performance status, prognostic score and some BIA measures. HPN may be an important therapy in oncology patients receiving chemotherapy. Longitudinal use of BIA may help track the effects of HPN and disease progression, potentially contributing to optimal global patient management.

Paediatric Home Artificial Nutrition in Italy: Report from 2016 Survey on Behalf of Artificial Nutrition Network of Italian Society for Gastroenterology, Hepatology and Nutrition (SIGENP).

Home Artificial Nutrition (HAN) is a safe and efficacious technique that insures children's reintegration into the family, society and school. Epidemiological data on paediatric HAN in Italy are not available. AIM: to detect the prevalence and incidence of Home Parenteral Nutrition (HPN) and Home Enteral Nutrition (HEN), either via tube or mouth, in Italy in 2016. MATERIALS AND METHODS: a specific form was sent to all registered SIGENP members and investigators of local HAN centres, inviting them to provide the requested centre's data and demographics, underlying diseases and HAN characteristics of the patients. RESULTS: we recorded 3403 Italian patients on HAN aged 0 to 19 years from 22 centres: 2277 HEN, 950 Oral Nutritional Supplements (ONS) and 179 HPN programs. The prevalence of HEN (205 pts/million inhabitants) and HPN (16 pts/million inhabitants) has dramatically increased in Italy in the last 9 years. Neurodisabling conditions were the first indication for HEN by tube or mouth while HPN is mainly requested in digestive disorders. CONCLUSIONS: HAN is a widespread and rapidly growing treatment in Italy, as well as in other European countries. Awareness of its extent and characteristics helps improving HAN service and patients' quality of life.

Intestinal failure: the evolving demographic and patient outcomes on home parenteral nutrition.

AIM: We performed this study to examine and understand the evolving demographics and changing outcomes of intestinal failure (IF) and its implications for healthcare delivery. METHOD: We conducted a retrospective analysis of outcome data of children on home parenteral nutrition (HPN), over a 15-year period. RESULTS: A total of 31 patients received HPN: 15 for short bowel syndrome (SBS), eight neuromuscular disease (NMD) and eight for other causes. The HPN prevalence increased from 1.54 per million children in 2000 to 21.5 in 2016. The outcomes over last 5 years were better than those of previous 10 years. The rate of catheter-related bloodstream infection (CRBSI) had fallen from 4 to 1.3 and IF liver disease (IFALD) from 20% to 7.7%. The aetiology changed over years from SBS being the main cause to NMD contributing 43% to the total in 2016. This was especially relevant as NMD was associated with greater numbers of IFALD (38% vs 6.7%), CRBSI (1.51 vs 0.64/1000 PN days) and mortality. CONCLUSION: The outcome of long-term parenteral nutrition (PN) has improved. The increasing number of patients with NMD, coupled with their higher burden of care, results in an increasing health care burden, and the planning of intestinal rehabilitation services needs to reflect this.

Changes in Home Parenteral Nutrition Practice Based on the Canadian Home Parenteral Nutrition Patient Registry.

BACKGROUND: Since 2005, the Canadian home parenteral nutrition (HPN) registry has collected data on patients' demography, outcomes, and HPN clinical practice. At annual meetings, Canadian HPN programs review and discuss results. AIM: To evaluate changes over time in patient demography, outcomes, and HPN clinical practice using the registry data. METHODS: This retrospective study evaluated 369 patients who were prospectively entered in the registry. Two periods were compared for the first data entry: 2005-2008 (n = 182) and 2011-2014 (n = 187). Patient demography, indications for HPN, HPN regimen, nutrition assessment, vascular access, and number of line sepsis per 1000 catheter days were evaluated. RESULTS: For 2011-2014 compared with 2005-2008, indications for HPN changed significantly, with an increased proportion of patients with cancer (37.9% vs 16.7%) and with fewer cases of short bowel syndrome (32% vs 65.5%); line sepsis rate decreased from 1.58 to 0.97 per 1000 catheter days; and the use of tunneled catheters decreased from 64.3% to 38.0% and was no longer the most frequently chosen vascular access method. In contrast, the proportion of peripherally inserted central catheters increased from 21.6% to 52.9%. In addition, there was a reduction in number and days of hospitalizations related to HPN, and favorable changes were noted in the prescription of energy, proteins, and trace elements. CONCLUSION: The Canadian HPN registry is useful in tracking trends in demography, outcomes, and clinical practice. Results suggest a shift in patient demography and line access with improvement in line sepsis, hospitalizations, and HPN prescriptions.

Nutrición Parenteral Domiciliaria en España durante 2015; informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA.

Objetivo: Comunicar los datos del registro de Nutrición Parenteral Domiciliaria (NPD) del grupo de trabajo NADYA-SENPE del años 2015.Material y métodos: Recopilación de los datos de NPD del registro "on-line" del grupo de Nutrición Artificial Domiciliaria y Ambulatoria (NADYA) desde el 1 de enero de 2015 al 31 de diciembre de 2015.Resultados: Se registraron 236 pacientes, con 243 episodios de NPD procedentes de 40 hospitales. Lo que representa una tasa de 5,08 pacientes/millón de habitantes/ año 2015. La patología más frecuente en los adultos fue "otros" (26,3%) seguido por "oncológico paliativo" (21,6%).  La complicación más frecuente fue la séptica relacionada con el catéter que presentó una tasa de 0,53 infecciones/1000 días de NPD. Finalizaron 64 episodios, la principal causa fue el fallecimiento (43,7%) y el 'paso a la vía oral' (32,8%).Conclusiones: constatamos el aumento de los centros y profesionales colaboradores, dando respuesta a la cantidad progresivamente mayor de pacientes con soporte nutricional parenteral en domicilio. Se mantienen estables las principales indicaciones para el establecimiento de NPD y las causas de finalización del tratamiento.

Nutrición enteral domiciliaria en la Región de Murcia. Perfil de la muestra, evolución del coste y perspectiva. Años 2007-2010.

Introducción: en Murcia, y hasta 2010, la administración de la nutrición enteral domiciliaria (NED) dictaba cumplir la regulación marcada en cuanto a los facultativos con competencias para su prescripción.Objetivos: examinar aspectos esenciales de este recurso en el periodo 2007-2010, características de la muestra y evolución del coste, así como perspectivas de futuro.Métodos: estudio del perfil de la población NED en un área de salud específica. Selección de recetas facturadas de productos NED en el conjunto de la Región, clasificación por tipos y análisis de la evolución en importe y en envases para el periodo 2007-2010.Resultados: respecto al perfil de la muestra del Área I de Salud de la Región, la patología, vía de administración y tipo de nutrición más frecuentes resultaron, respectivamente, la enfermedad neurológica, la vía oral y la nutrición no específica. Por otro lado, el gasto sanitario en productos dietoterápicos, en el Servicio Murciano de Salud, aumentó alrededor del 50% entre los años 2007 y 2010. Tanto en envases como en importe, Murcia se sitúa por encima de la media nacional.Conclusiones: el perfil de la muestra no coincide con trabajos publicados en otras regiones. Este dato, junto a la posición de Murcia en gasto dietoterápico, y su evidente tendencia al alza en los años analizados, hace evidente la necesidad de medidas que mejoren la calidad de la NED en la Región de Murcia y, en caso de ser posible, conseguir alcanzar valores nacionales en relación con el consumo medio y el gasto.

Development and validation of a nomogram to predict survival in incurable cachectic cancer patients on home parenteral nutrition.

BACKGROUND: The use of home parenteral nutrition (HPN) in incurable cancer patients is extremely varied across different countries and institutions. In order to assess the clinical impact implied, we previously conducted a survey of incurable cancer patients receiving HPN, which shows that survival was markedly affected by Karnofsky performance status (KPS), tumor spread, Glasgow prognostic score (GPS) and tumor site. The aim of this study was to develop a nomogram incorporating the above factors for survival prediction. PATIENTS AND METHODS: We gathered a series of 579 patients, all receiving HPN, which was randomly split into a training and a testing sample. Using Cox proportional hazard regression modeling, a nomogram was built in the training sample, in order to estimate median survival or survival probability at 3 and 6 months according to individual patient characteristics. The nomogram performance was then verified in the testing sample. RESULTS: In the training sample, median survival was 3.2 (95% CI 3.0-3.7) months. GPS, KPS, tumor site and spread were confirmed to be significant prognostic factors. A significant interaction was also shown between the site and spread while weight loss (WL), adjusted for body mass index, failed to provide any substantial prognostic contribution. In the testing sample, nomogram performance was good in terms of calibration and discreet regarding discrimination. CONCLUSION: With the growing availability of new oncological treatments and their tendency to transform the trajectory of the advanced cancer into a chronic condition characterized by progressive WL and poor nutrients intake, an increasing number of patients are expected to receive HPN. In such a setting, tools for predicting the survival outcome may play a role toward personalized medicine and for investigating novel experimental therapies. Our proposed nomogram is a step forward in this direction but needs to be made stronger in order to definitely have clinical utility.

[Home Parenteral Nutrition (HPN) registry in Spain for the years 2007, 2008 and 2009 (NADYA-SENPE Group)]. / Registro de la Nutrición Parenteral Domiciliaria (NPD) en España de los años 2007, 2008 y 2009 (Grupo NADYA-SENPE).

OBJECTIVE: To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the years 2007, 2008 and 2009. METHODOLOGY: We compiled the data from the on-line registry introduced by the responsible Units for the monitoring of HPN from January 1st 2007 to December 31st 2009. 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: 2007: 133 patients with HPN were registered (61 males and 72 females), belonging to 21 hospitals. Average age for the 119 patients older than 13 years old was 53.7 ± 14.9 years, and 3.6 ± 3.6 y. for the 14 patients under 14 years old. Most frequent pathology was neoplasm (24%), followed by intestinal motility disorders and actinic enteritis (14% both). The reason for HPN provision was short bowel syndrome (43%), malabsorption (27%), and intestinal obstruction (23%). Tunnelled catheters were mostly used (69%), followed by implanted port-catheters (27%). Catheter related infections were the most frequent complications, with a rate of 0.92 episodes/103 HPN days. HPN was provided for more than two years in 50% of the cases. By the end of 2007, 71.4% of the patients remained active; exitus was the most frequent reason to end HPN (57.5%). 26% of the patients were eligible for intestinal transplant. 2008: 143 patients with HPN were registered (62 males and 81 females), belonging to 24 hospitals. Average age for the 133 patients older than 13 years old was 54.7 ± 13.9 years, and 3.7 ± 0.6 y. for the 10 patients under 14 years old. Most frequent pathology was neoplasm (20%), followed by actinic enteritis (14%) and intestinal motility disorders (13% ). The reason for HPN provision was short bowel syndrome (44%), malabsorption (28%), and intestinal obstruction (20%). Tunnelled catheters were mostly used (60%), followed by implanted port-catheters (29%). Catheter related infections were the most frequent complications, with a rate of 0.50 episodes/10³ HPN days. HPN was provided for more than two years in 67% of the cases. By the end of 2008, 71.6% of the patients remained active; exitus was the most frequent reason to end HPN (52.4%). 29% of the patients were eligible for intestinal transplant. 2009: 158 patients with HPN were registered (62 males and 96 females), belonging to 24 hospitals. Average age for the 149 patients older than 13 years old was 55.2 ± 13.0 years. Most frequent pathology was neoplasm (25%), followed by actinic enteritis (12%) and intestinal motility disorders (11%). The reason for HPN provision was short bowel syndrome (42%), malabsorption, and intestinal obstruction (23% both). Tunnelled catheters were mostly used (60%), followed by implanted port-catheters (36%). Catheter related infections were the most frequent complications, with a rate of 0.67 episodes/10³ HPN days. HPN was provided for more than two years in 58% of the cases. By the end of 2009, 79.2% of the patients remained active; full oral nutrition was the most frequent reason to end HPN (48%). 23% of the patients were eligible for intestinal transplant. CONCLUSIONS: We observe an increase in registered patients with respect to previous years, with a very different prevalence among regions. Neoplasia remains as the main pathology since 2003. We observe a decrease in catheter-related infections in the last two years, being the 2008 rate the smallest since the register's beginning.

Trends in paediatric home parenteral nutrition and implications for service development.

BACKGROUND & AIMS: The demand for home parenteral nutrition (HPN) services for children has risen over the past 20 years. To plan a strategy for delivery of care at regional level, we carried out a national point prevalence survey of HPN during February 2010. METHODS: Paediatric gastroenterologists in 33 hospitals known to have provided HPN services were identified from their membership of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition and participation in the British Intestinal Failure Survey (BIFS). Anonymised data were collated by the BIFS administrator and results compared with a similar study performed by the British Paediatric Surveillance Unit in 1993. Trends in underlying diagnosis were explored using the BIFS database for 2006-2009. RESULTS: 139 children on HPN were reported; a fourfold increase since 1993; six of these were older than 16 years. The regional point prevalence of HPN varied from 1.76 to 41.4 per million, with a mean of 13.7 patients per million. Short bowel syndrome had increased from 27% to 63% of cases. CONCLUSIONS: The large overall increase in numbers of HPN patients suggests that a national strategy needs to be developed for the management of chronic IF.

Current status of pediatric home enteral nutrition in Spain: The importance of the NEPAD register / Estado actual de la nutrición enteral pediátrica en España: la importancia del registro NEPAD

Home enteral nutrition (HEN) is a type of enteral nutrition (EN) which is becoming progressively more widespread in pediatrics due to the benefits it affords to patients, their families and to reducing hospital costs. However, the true extent of its use is unknown in Spain as the data-base set up for this purpose is still underused (Registro de Nutrición Enteral Pediátrica Ambulatoria y Domiciliaria -NEPAD-). More thorough registration of patients in the NEPAD online register will provide information about the characteristics of HEN in Spain: prevalence, diagnosis, the population sector being administered HEN, complications and developments. Likewise, forecast and planning of the necessary resources could be made while those in use could be analysed (AU)

La nutrición enteral domiciliaria (NED) es una modalidad de nutrición enteral (NE) con una progresiva extensión en pediatría por los beneficios que supone para el paciente, sus familiares y la disminución de los costes hospitalarios. Sin embargo, se desconoce su verdadero alcance en España ya que el registro creado a tal efecto está aún infrautilizado (Registro de Nutrición Enteral Pediátrica Ambulatoria y Domiciliaria -NEPAD-). La inclusión exhaustiva de pacientes en NEPAD permitiría conocer las características de la NED en España: prevalencia, indicaciones, población a la que se le está administrando, complicaciones y evolución. Así mismo se podría realizar una previsión y planificación de los recursos que se precisan y analizar los que se están utilizando (AU)

Current status of pediatric home enteral nutrition in Spain: the importance of the NEPAD register.

Home enteral nutrition (HEN) is a type of enteral nutrition (EN) which is becoming progressively more widespread in pediatrics due to the benefits it affords to patients, their families and to reducing hospital costs. However, the true extent of its use is unknown in Spain as the data-base set up for this purpose is still underused (Registro de Nutrición Enteral Pediátrica Ambulatoria y Domiciliaria -NEPAD-). More thorough registration of patients in the NEPAD online register will provide information about the characteristics of HEN in Spain: prevalence, diagnosis, the population sector being administered HEN, complications and developments. Likewise, forecast and planning of the necessary resources could be made while those in use could be analysed.

[The Spanish Home Enteral Nutrition registry of the year 2009: from the NADYA-SENPE group]. / Registro español de Nutrición Enteral Domiciliaria del año 2009: Grupo NADYA-SENPE.

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.