[Spanish Registry of Home-based Parenteral Nutrition during 2006 (NADYA-SENPE Group)]. / Registro de la Nutrición Parenteral Domiciliaria (NPD) en España del año 2006 (Grupo NADYA-SENPE).

OBJECTIVE: To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the year 2006. METHODOLOGY: We compiled the data from the on-line registry introduced by the responsible Units for the monitoring of HPN from January 1st to December 31st 2006. RESULTS: 103 patients with HPN were registered (47 males and 56 females), belonging to 19 hospitals. Average age for the 91 patients older than 14 years old was 53.3 +/- 14.9 years old, and that for the 12 patients under 14 years old was 2 +/- 0 years old. Most frequent pathology was neoplasm (29%), followed by intestinal motility disorders (13%). The reason for HPN provision was short bowel syndrome (40%), intestinal obstruction (22%), and malabsorption (21%). Tunneled catheters were mostly used (45%), followed by implanted port-catheters (32%). Catheter related infections were the most frequent complications, with a rate of 0.85 episodes / 10(3) days. HPD was provided for more than two years in 50% of the cases. By the end of 2006, 70.9% of the patients remained active; exitus was the most frequent reason to end HPN (53%). Complementary oral or enteral nutrition was provided to 52% of the patients. 48% of the patients had a normal activity level, and a 55% were autonomous. PN formula was supplied by the hospital in 82% of the cases, while this number was 78% for fungible materials. 27% 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 with respect to the 2004-2005 period.

[The year 2003 National Registry of Home-based Parenteral Nutrition]. / Registro Nacional de la Nutrición Parenteral Domiciliaria del año 2003.

OBJECTIVE: To report the results of the Home-based Parenteral Nutrition (HBPN) registry of the NADYA-SENPE working group, for the year 2003. MATERIAL AND METHODS: Gathering of registry data introduced by all units responsible of HBPN patient care. This an on-line registry available for authorized users of the working group web page (www.nadya-senpe.com). Epidemiological data, diagnosis, access route, complications, hospital admissions, disability degree, and course at December 31st, 2003 RESULTS: Data from 86 patients (62% female and 38% male) from 17 hospitals were gathered. Mean age of adult patients was 50.7 +/- 15.0 years, whereas for patients younger than 14 years was 2.4 +/- 1.5 years (n = 5 patients). Diseases that prone HBPN were neoplasm (21%), followed by mesenteric ischemia (20%), radiation enteritis (16.3%), motility impairments (10.5%), and Crohn's disease (4.6%). Tunneled catheters were used in 66.3% of the cases versus 29.1% of subcutaneous reservoirs. Mean treatment duration has been 8.5 +/- 4.6 months; 67.4% of patients had been on HBPN for a period of time longer than 6 months. Patient follow-up was mostly done from the reference area hospital (88.4%). In no case patient follow-up was done by the primary care team or by specialists other than those prescribing nutritional support. Nutritional support-related complications were seen in 98 occasions. The most frequent complications were infectious ones. They represented 1.60 hospital admissions per patient. The mean number of visits was 7.9 per patient (6.4 for scheduled visits and 1.5 for emergency visits). By the end of the year, we observed that 73.3% of the patients were still on the program, whereas in 23.3% HBPN had been withdrawn. The main reasons for withdrawal were decease (11 patients), and advancing to oral diet (9 patients). As for the disability degree, 13% were confined to a wheelchair or bed, and only 28% had no disability degree or only mild social disability. CONCLUSIONS: We observed a mild increase in HBPN prevalence rate in Spain (2.15 patients pmp). The main indication was cancer followed by short-bowel syndrome secondary to vascular pathology. Nutritional support-related complications were common, especially those of an infectious origin.

[Conclusions of the III SENPE Debate Forum on specialized nutritional support: ethical issues]. / Conclusiones del III Foro de Debate SENPE. Soporte nutricional especializado: aspectos eticos.

Conclusions of the III SENPE-Abbott Debate Forum on several ethical issues of specialized nutritional support in hospitalized patients and outpatients. An insight in the principle of equity is given depending on geographical location, in its indications both as a primary therapy and palliative care, and in informed consent.

[The year 2002 national register on home-based parenteral nutrition]. / Registro nacional de la nutrición parenteral domiciliaria del año 2002.

AIM: To report on the results of the Registry on Home-based Parenteral Nutrition (HPN) of the NADYA-SENPE working group, corresponding to the year 2002. MATERIALS AND METHOD: Compilation of the registry data loaded by the Units in charge of HPN patients care. It consists of an on-line registry available to the registered users of the group's web page (www.nadya-senpe.com). Epidemiological, diagnostic, access route, complications, hospital admissions, degree of disability, and course until December 31st of 2002. RESULTS: Data from 74 patients were gathered (56.8% women and 43.2% men), from 18 hospital centers. Mean age of adult patients was 49.4 +/- 15.5 years and 2.3-1.1 years for patients younger than 14 years (n=3 patients). Diseases that prompted the use of HPN were mesenteric ischemia (29.7%), followed by neoplasms (16.2%), radiation enteritis (12.2%), motility impairments (8.1%), and Crohn's disease (5.4%). Tunneled catheters were used in 52.7% of cases, as compared to 36.5% of subcutaneous reservoirs. Mean treatment duration was 8.7 +/- 4.4 months; 68.9% of patients remained on HPN for a duration longer than 6 months, and in 41.9% longer than one year. Patients' follow-up was mainly done from the reference hospital (87.8%), and the remaining patients (12.5%) by the home care team. In no case patients were followed by the primary care team or other specialists than the ones that prescribed nutritional support. In 94 cases there were complications related to nutritional therapy. The more frequent complications presented were infectious. These complications represented 1.84 admissions per patient. The mean number of visits was 12.9 per patient (10.2 routinary visits and 2.7 emergency visits). At the end of the year, we observed that 74.3% patients stayed in the program, whereas in the remaining 23.6% HPN had been discontinued. The main causes for discontinuation were death (52.9%), and switch to oral diet (23.5%) or enteral nutrition (11.8%). With regards to disability degree, 16.1% were confined to a wheelchair or bed, and 17.6% had no disability at all or only a mild social disability. CONCLUSIONS: We observed a sustained HPN prevalence rate in Spain (1.8 patient pmp). The main cause for its use was short bowel syndrome secondary to vascular disease, followed by cancer. Complications associated to nutritional therapy were common, especially of infectious origin.

[The year 2002 national registry on home-based enteral nutrition]. / Registro nacional de la nutrición enteral domiciliaria del año 2002.

GOAL: To communicate the information available by the NADYA-SENPE Working Group from patients on Home Enteral Nutrition (HEN) in our country during the year 2002. MATERIAL AND METHODS: The data were collected through a closed questionnaire included in the web site of the Working Group (www.nadya-senpe.com) available only by the authorized users. Variable included were: epidemiological information, the indication to prescribe this treatment, the access path, the specific nutritional formula used, the treatment duration, the complications and hospital readmission related to the nutritional treatment, the follow-up and the quality of life. RESULTS: We register 3967 patients that belong to twenty-one hospitals. Mean age from those adults 69.2 +/- 19.2 years, and from those younger than 14, 5.6 +/- 4.1 years. Neurological and neoplasic diseases were the diagnostics more frequents (39.2% and 34.6%, respectively). Oral nutrition was the preferential rout used for the enteral nutrition (53.6%) followed by naso-enteral tube (30.6%), and only in 15.8% we used ostomy tubes. Polymeric was the enteral formula mainly utilized (81.5%). The mean time on HEN was 5.8 +/- 4.4 months; the 35.7% of patients stayed in the treatment for less than 3 months, 22.4% between 3 and 6 months, and 41.6% more than 6 months. Patients were followed mainly by Nutritional Support Unit from the reference hospital (75.3%). While the reference hospital supplies the material (65.7%), reference hospital pharmacy (43%) and public pharmacies (37.3%) provides the enteral formula. Complications related to enteral nutrition included change of enteral tube (29.7%), mechanical complications (22.9%), gastrointestinal complications (22.9%), and the metabolic one (9.2%). These complications were followed by 0.02 hospitalizations/patient. At the end of the year, 49.3% of patients were in the HEN programme, and in 41.5% HEN was finish due to accept oral conventional alimentation (47.3%) or by deceased of patients. While 31.8% of the patients were confined to bed o armchair, 17.8% no o light discapacity degree was observed. CONCLUSIONS: We found a persistence of these treatment in our country (96.5 patients/million inhabitants. Neurological and neoplasic diseases were the more frequent diagnosis in patients analysed. The high prevalence of cancer patients could be the main cause of oral access for enteral nutrition. Change of enteral tube was the more frequent complication observed during this treatment.

[National Task Force on Home and Ambulatory Artificial Nutrition. NADYA. The NADYA Group]. / Grupo de Trabajo Nacional en Nutrición Artificial Domiciliaria y Ambulatoria. NADYA. Grupo NADYA.

When a patient needs parenteral or enteral nutrition, be it in a transitory way or as a permanent form, and hospitalization is not strictly required, this treatment should take place in the home of the patient whenever possible. The support with artificial nutrition can be equally efficient, improving the life expectancy ad the quality of life of patients who would otherwise be faced with a much prolonged hospital stay. The Ambulatory and Home Artificial Nutrition group (NADYA) is a multidisciplinary team of health care professionals, from different areas of the national territory, who are dedicated to Clinical Nutrition. With the objective of promoting health and well-being of patients undergoing treatment, and to ease the therapeutic activity of the implicated professionals, this group has developed a series of suggestions for the practice of enteral or parenteral nutrition in the home of the patient. These suggestions include specifications about the technical team, criteria for selection and training of the patients, routes of access, formulas and material needed, follow up characteristics, and associated complications, and the represent a consensus of the regulations necessary for the guarantee of an adequate level of security and efficiency of the at home care of patients who require artificial nutrition support.

[Parenteral nutrition at home: NADYA register for the year 2000]. / Nutrición parenteral domiciliaria (NPD): registro NADYA. Año 2000.

AIM: We analyze the registered data of home parenteral nutrition (HPN) in our country during the year 2000. METHOD: The data were collected through a previously designed questionnaire. Apart from epidemiological information, the form includes the disease to prescribe this treatment, the specific nutritional treatment used and its duration, access path, complications and readmission rate in hospital, follow-up of the treatment, and progress. All data were processed and analysed by the co-ordinating team. RESULTS: Fourteen hospitals participated, and 67 patients were enrolled. Middle age was 5 +/- 4 years for patients < 14 years old, and 48 +/- 15 years for those > or = 14 years old. The more prevalent diagnosis were: ischemic bowel (28.4%), neoplasm (16.4%), radiation enteritis (13.4%), motility disorders (7.5%), Crohn's disease (2.9%), and other. The mean time on HPN was 7.5 +/- 4.4 months. Tunelized catheter was the preferential route (77.6%), followed by the implantated one (20.9%). The intermittent method (nocturnal) was preferential (91.0%). Patients receive the formula from hospital pharmacy more frequently than from Nutriservice (71.5% versus 19.4%). The complications related to nutrition (0.32/100 days of HPN) included the infections (0.12 catheter sepsis/100 d of HPN), metabolic (0.06/100 d of HPN), mechanic (0.03/100 d of HPN) and electrolitic disorders (0.03/100 d of HPN). The readmission rate, for nutritional problems, was 0.3 hospitalizations/100 d of HPN. At the end of the year, 61.2% of the patients remained in the HPN program, 37.3% abandoned the treatment (due to death (40%), to progress to oral feeding (48%), and to progress to enteral nutrition (4%); and 1.5% of the patients were not follow up. CONCLUSIONS: This review illustrates that there is an increment in the registration of HPN patients in our country (1997: 0.7 patients/10(6) habitants, 2000: 1.9 patients/10(6) habitants), that vascular pathology is the more frequent diagnoses in HPN patients, and the rate of readmission and complications and the behaviour is similar to other series making this as a safe treatment in our place.

[Enteral nutrition at home: National register for the year 2000]. / Nutrición enteral domiciliaria (NED): Registro Nacional del año 2000.

GOAL: Once again, the NADYA-SENPE Working Group analysed the registered data of Home Enteral Nutrition (HEN) in our country, during the year 2000. MATERIAL AND METHODS: The data were collected through a closed questionnaire included on our web site (www.nadya-senpe.com). Apart from epidemiological information, the form includes the indication to prescribe this treatment, the specific nutritional treatment used and its duration, access path, complications and readmission rate in hospital, follow-up of the treatment, patient's quality of life and progress. All data were processed and analysed by the co-ordinating team. RESULTS: Twenty two hospital participated and 2,986 patients, aged 65.1 +/- 19.7 years, were enrolled. Of these patients, 41.2% were diagnosed with neurological diseases and 33.3% with cancer. The mean time on HEN was 6.3 +/- 4.4 months. Oral nutrition was the preferential route (50.8%), followed by nasoenteral tube (30.5%), and in 17.4% ostomy tubes were placed. Polymeric was the formula composition mainly used (83.2%). Patients were followed (70.1%) by the hospital reference Nutritional Support Unit. The complications related to nutrition included the gastrointestinal (0.25 complications/patient), the mechanical one (0.19 complications/patient), and the metabolic (0.007 complications/patient). Feeding tube need to be replaced 0.3 times/patient/year. The readmission rate, for nutritional problems, was observed in 0.03 patients. At the end of the year, 54.9% of the patients were in the HEN program, and in 30.3% HEN was finish due to different reasons. In 21.9% of the patients no, o light, discapacity degree was found. CONCLUSIONS: Related to previous years, there is an increment in the number of enrolled patients. Neurological diseases and cancer were the more frequent diagnoses in HEN patients. Oral access was the higher feeding route due, probably, to the high prevalence of cancer patients. In spite of the elevated prevalence of neurological diseases, a few number of patients were feed with ostomy tube. Finally, due to the few readmission rate and complications, HEN is a safe treatment in our country.

[National Registry of Home Parenteral Nutrition of the year 2001]. / Registro Nacional de la Nutrición Parenteral Domiciliaria (NPD) del año 2001.

AIM: We analyse the registered data of home parenteral nutrition (HPN) in our country during the year 2001. METHOD: The data were collected through a previously designed questionnaire. Apart from epidemiological information, the form includes the disease to prescribe this treatment, the specific nutritional treatment used and its duration, access path, complications and readmission rate in hospital, follow-up of the treatment, and progress. All data were processed and analysed by the co-ordinating team. RESULTS: Seventeen hospitals participated, and 66 patients were enrolled. Middle age was 5.5 +/- 4.9 years for patients < 14 years old, and 49.2 +/- 15.8 years for those > or = 14 years old. The more prevalent diagnosis were: ischemic bowel (28.9%), neoplasm (22.7%), radiation enteritis (12.1%), motility disorders (4.5%) and Crohn's disease (4.5%). The mean time on HPN was 8.4 +/- 4.5 months. Tunnelled catheter was the preferential route (62.1%), followed by the implantated one (33.3%). The intermittent method (nocturnal) was preferential (81.8%). Patients receive the formula, mainly from hospital pharmacy (75.7%). The complications related to nutrition (1.3/patient) included the infections (0.46 sepsis/patient, and 0.19 catheter contamination/patients), mechanic (0.15/patient), metabolic (0.1/patient) and electrolytic disorders (0.07/patient). The readmission rate, for nutritional problems, was 1.34/patient. At the end of the year, 74.2% of the patients remained in the HPN program, and 25.8% abandoned the treatment (due to death: 52.9%, and to progress to oral feeding (25.3%). CONCLUSIONS: This review illustrates that the registration of HPN patients in our country is standing (1.65 patients/10(6) habitants), that vascular pathology is the more frequent diagnoses in HPN patients, and the rate of readmission and complications and the behaviour is similar to other series making this as a safe treatment in our place.

[Artificial nutrition in the home. 1995 yearly report. NADYA-SENPE Group (Natiional Registry of Patient-Spanish Society for Parnteral and Enterlal Nutrition]. / Nutrición artificial domiciliaria. Informe anual 1995. Grupo NADYA-SENPE.

By means of a simplified questionnaire, the NADYA group has gathered and analyzed data with regard to the age, sex, diagnosis, access route, duration, form of administration, complications, and quality of life, in 812 patients (62% male; 37% female) with At Home Enteral Nutrition (AHEN), and 19 patients (42% male; 57% female) with At Home Parenteral Nutrition (AHPN) corresponding the National Registry of 1995. The most frequent indication of AHEN was a neoplasm (41%), followed by neurological alterations (33%). The most common access route is the NGT (37%) followed by oral administration in 37%, PEG in 13% and surgical ostomics in 8%. The mean treatment time is 8 months. The index of complications/patient-year is 0.50 (gasterointestinal 0.17, and mechanical alterations 0.9). At the end of the study, 63% of the patients continued to receive AHEN, showing a mortality rate of 70%. The majority of the patients undergoing treatment presented a sever social disability (20%) or were bed ridden (18%). The most common indications for the AHPN are: radical enteritis (26%), Crohn's disease (21%), and mesenteric ischemia (16%). AIDS, motility alterations, and neoplasic diseases are scantly represented (10%). Tunneled catheters are used in 58% of the cases, and Port-a-Cath in 31%). The mean duration for the treatment was 7.9 months. An index of 0.47 hospitalization/patient-year was seen in relation to the nutritional treatment (mainly due to catheter septicemia). A mortality of 16% is noted, and 21% show a recovery of the oral route. 42% of the patients did not present an assessable social disability.

[Home enteral nutrition. Annual report 1999. NADYA-SENPE Group]. / Nutrición enteral domiciliaria. Informe anual 1999. Grupo NADYA-SENPE.

GOAL: During 1999, as in previous years, the NADYA-SENPE Group has maintained an annual register of patients with Artificial Nutrition at Home in order to keep up to date our available knowledge of this therapy. The present paper analyzes the results of the sixth National Register of patients under treatment with Enteral Nutrition at Home corresponding to 1999, produced with the co-operation of twenty-three centres in the Spanish national health network. MATERIAL AND METHODS: The data were collected through a closed questionnaire included on our web site (www.nadya-senpe.com). Apart from epidemiological information, the form includes the indication that led to the prescription of nutrition, nutritional treatment, access path, complications and admissions to hospital, follow-up of the treatment, patients' quality of life and progress. All of the data are processed by the co-ordinating team. The Nutrition Unit at La Paz Teaching Hospital in Madrid has acted as the group co-ordinator. RESULTS: During 1999, a total of 2,262 patients at the twenty-three collaborating centres followed treatment with Home Enteral Nutrition (NED in its Spanish acronym). The mean age was 63.6 (19.67 years (males: 57.6%; females: 42.3%). The mean time with nutritional treatment is 5.89 (4.25 months. The neurological alterations (37.5%) and neoplasias (36.8%) were the most frequent indications for NED. Most patients used oral administration (50.7%), the use of artificial routes is less frequent, with 5NG being used on 27.9% and PEG on 12.7%. The polymeric formulas are the ones most commonly used (87.7%). The number of complications recorded amounted to 1,403 episodes, representing 0.62 complications per patient per year, of which 40.8% were gastro-intestinal (0.26 complications per patient per year) and 18.7% were mechanical complications, with only 9 recorded cases of bronchoaspiration. It was necessary to admit patients to hospital on 836 occasions (0.38 admissions per patient), albeit generally for causes not associated with nutrition (86.1%). At year-end, 51.4% of patients continued to receive nutritional support. CONCLUSIONS: Enteral nutrition at home is a safe technique whose use is growing in Spain. It requires the existence of appropriately equipped nutrition teams as well as the collaboration of the Primary Health Care services and the suitable training of patients and relatives. It is essential to progress more deeply into the development and application of clinical routes that provide a clear and concise methodology covering all nutrition-related aspects. In itself, nutrition is a therapeutic alternative regardless of whether access is obtained through a natural or an artificial route. It is necessary for the persons responsible for health-care administration to realize that the appropriate nutrition of patients leads to an improvement in their general health, a shorter course for their illness and, therefore, a reduction in costs.

[Home Enteral Nutrition: National Registry 2001]. / Nutrición Enteral Domiciliaria (NED): registro nacional 2001.

GOAL: The NADYA-SENPE Working Group analyzed the registered data of patients on Home Enteral Nutrition (HEN) in our country, during year 2001. MATERIAL AND METHODS: The data were collected through a closed questionnaire included on our web site (www.nadya-senpe.com). Apart from epidemiological information, the form includes the indication to prescribe this treatment, the specific nutritional treatment used and its duration, access path, complications and readmission rate in hospital, follow-up of the treatment, patient's quality of life and progress. All data were processed and analyzed by the coordinating team. RESULTS: Twenty two hospitals participated and 3,458 patients, aged 5.6 +/- 4.0 y for those younger than 14 y, and 67.1 +/- 19.5 y for those older than 14 y, were enrolled. Of these patients, 43.4% were diagnosed with neurological diseases and 33.5% with cancer. The mean time on HEN was 6.5 +/- 4.5 months. Oral nutrition was the preferential route (54.5%), followed by nasoenteral tube (32.3%), and in 13.3% ostomy tubes were placed. Polymeric was the formula composition mainly used (85.9%). Patients were followed (71.1%) by the hospital reference Nutritional Support Unit. The complications related to nutrition included mainly the gastrointestinal (0.16 complications/patient), and the mechanical one (0.15 complications/patient). At the end for the year, 48.3% of the patients were in the HEN program, and in 33.3% HEN was finish due to different reasons. In 22.9% of the patients no, o light, discapacity degree was found. CONCLUSIONS: Neurological diseases and cancer were the more frequent diagnoses in HEN patients. Oral access was the higher feeding route due, probably, to the high prevalence of cancer patients. In spite of the elevated prevalence of neurological diseases, a few number of patients, as previous years, were feed with ostomy tube. Due to the few complications observed, HEN is a safe treatment in our country.

[Artificial nutrition in the home. Annual information 1996.Group NADYA-SENPE]. / Nutrición artificial domiciliaria. Informe Anual 1996. Grupo NADYA-SENPE.

Using a simplified questionnaire from the NADYA group, data referring to age, sex, diagnosis, access route, duration, form of administration, complications, and quality of life have been gathered from 1,400 patients (57% male, 43% female) who receive home enteral nutrition, and from 38 patients (20% male and 18% female) who receive home parenteral nutrition. All of these patients come from the 1996 national registry. The most common indication for home enteral nutrition are neoplasias (39%) followed by neurological alterations (33%). The most common access route is oral (48%), followed by a nasogastric tube in 34%, PEG in 10% and surgical ostomies in 7%. The average treatment duration is 6 months. There is an index of 0.74 complications/patient-year (gastrointestinal 0.28 and mechanical alterations 0.19). At the end of the year 58% of the patients continued to use at home enteral nutrition, with a death rate of 17%. The majority of the treated patients presented a severe social disability (28%) or was bed-ridden (22%). The most common indications for home parenteral nutrition are: neoplasia (42%), Crohn_s disease (10%), and mesenteric ischemia (10%). AIDS (8%), radical enteritis (5%), and motility disorders (5%) are less common. In 42% of the cases tunneled catheters are used, and port-a-cath are used in 53%. The average treatment duration is 6.9 months. 1.06 hospitalizations/patient-year have been registered in relation to the nutritional treatment (mainly catheter sepsis). A mortality of 29% is registered, and there is recovery of the oral route in 7.9% of the cases. 50% of the patients present a severe social disability.

[Home-Based Parenteral Nutrition (HBPN)-associated hepatobiliary complications]. / Complicaciones hepatobiliares asociadas a la Nutrición Parenteral Domiciliaria (NPD).

Home-based parenteral nutrition (HBPN) allows recovering or maintaining the nutritional status of patients with chronic intestinal failure that cannot afford their nutritional requirements through the digestive route. Frequently, liver function impairments develop along the treatment, which in the most severe cases, and especially in premature and low-weight infants, may lead to an irreversible liver failure. The proper composition of the parenteral nutrition bag, avoiding an excess of energy intake, together with the use of new types of lipid emulsions (with lower content in -6 fatty acids and voided of phytosterols) as well as the use, although being minimal, of the enteral route, may contribute to a decrease in the occurrence of HBPN-associated liver disease. It is necessary to perform monthly clinical and biochemical checks to early detect liver function impairments in order to perform the appropriate changes in the treatment and assess the indication of a potential bowel transplant before the liver damage becomes irreversible.

Cardiovascular disease in familial hypercholesterolaemia: influence of low-density lipoprotein receptor mutation type and classic risk factors.

AIM: To determine the effect of the type of mutation in low-density lipoprotein receptor gene and the risk factors associated with the development of premature cardiovascular disease (PCVD) in a large cohort of heterozygous familial hypercholesterolemia (hFH) subjects with genetic diagnosis in Spain. METHODS AND RESULTS: A cross-sectional study was conducted on 811 non-related FH patients (mean age 47.1+/-14 years, 383 males and 428 females) with a molecular defect in the low-density lipoprotein receptor (LDLR) gene from the Spanish National FH Register. Prevalence of PCVD was 21.9% (30.2% in males and 14.5% in women, P<0.001). Mean age of onset of cardiovascular event was 42.1 years in males and 50.8 years in females. Of those patients with PCVD, 59.5% of males and 27% of females suffered a second cardiovascular (CV) event. In multivariate analysis male gender, age, tobacco consumption (ever), and total cholesterol/HDL-cholesterol (TC/HDL-C) ratio were significantly associated with PCVD. Two hundred and twenty different mutations were found with a large heterogeneity. Patients carrying null-mutations had significantly higher frequency of PCVD and recurrence of CV events. No relationship with Lp(a) levels and genotype of Apo E were found. CONCLUSIONS: This study confirms the importance of identifying some classic risk factors such as smoking and TC/HDL-C ratio, and also the type of mutation in LDLR gene in order to implement early detection and intensive treatment for the prevention of cardiovascular disease in FH patients.

Complicaciones hepatobiliares asociadas a la Nutrición Parenteral Domiciliaria (NPD) / Home-based parenteral nutrition (hbpn)-associated hepatobiliary complications

La Nutrición Parenteral Domiciliaria (NPD) permite recuperar o mantener el estado nutricional de los pacientes con insuficiencia intestinal crónica que no pueden cubrir sus requerimientos nutricionales por vía digestiva. Es frecuente que a lo largo del tratamiento aparezcan alteraciones de la función hepática que, en los casos más graves y sobretodo en niños prematuros y debajo peso, pueden condicionar un fallo hepático irreversible. La correcta composición de la bolsa de nutrición parenteral, evitando un excesivo aporte de energía, junto con el uso de nuevos tipos de emulsiones lipídicas (con menor contenido en ácidos grasos de la serie ω-6 y exentas de fitosteroles) así como la utilización, aunque sea mínima, de la vía digestiva pueden contribuir a disminuirla aparición de la hepatopatía asociada a la NPD. Es imprescindible realizar controles periódicos clínicos y analíticos para detectar precozmente las alteraciones de la función hepática con objeto de realizar los cambios adecuados en el tratamiento y valorar la indicación de un posible trasplante intestinal antes de que el fallo hepático sea irreversible (AU)

Home-based parenteral nutrition (HBPN) allows recovering or maintaining the nutritional status of patients with chronic intestinal failure that cannot afford their nutritional requirements through the digestive route. Frequently, liver function impairments develop along the treatment, which in the most severe cases, and especially in premature and low-weight infants, may lead to an irreversible liver failure. The proper composition of the parenteral nutrition bag, avoiding an excess of energy intake, together with the use of new types of lipid emulsions(with lower content in -6 fatty acids and voided of phytosterols) as well as the use, although being minimal,of the enteral route, may contribute to a decrease in the occurrence of HBPN-associated liver disease. It is necessary to perform monthly clinical and biochemical checks to early detect liver function impairments in order to perform the appropriate changes in the treatment and assess the indication of a potential bowel transplant before the liver damage becomes irreversible (AU)

Protocolo para el diagnóstico y tratamiento de la osteopatía metabólica en el enfermo con nutrición parenteral domiciliaria / A protocol for the diagnosis and treatment of metabolic osteopathy in patients with home-based parenteral nutrition

Los pacientes que presentan una insuficiencia intestinal severa sometidos a un programa de nutrición parenteral domiciliaria tienen un riesgo elevado de presentar alteraciones en el metabolismo óseo. Esta disminución de la calidad del hueso tiene un origen multifactorial y puede estar ya presente en el momento de instaurar el soporte nutricional. Es necesario disponer de protocolos que nos permitan realizar un diagnóstico precoz de la enfermedad osteometabólica e instaurar el tratamiento oportuno con objeto de evitar fracturas y mejorar la calidad de vida de estos enfermos

Patients presenting severe intestinal failure submitted to a home-based parenteral nutrition program have increased risk for bone metabolism impairments. This decrease in bone quality has a multifactorial origin and may be already present when implementing nutritional support. There is the need for having available protocols allowing early diagnosis of osteo-metabolic disease and implementing adequate therapy to prevent fractures and improving the quality of life of these patients

Registro de la nutrición parenteral domiciliaria en España de los años 2004 y 2005 (Grupo NADYA-SENPE) / Spanish Registry of home-based parenteral nutrition for the years 2004 and 2005 (NADYA-SENPE GROUP)

Objetivo: Comunicar los resultados obtenidos en el registro de Nutrición Parenteral Domiciliaria (NPD) del grupo NADYA-SENPE en los años 2004-2005. Material y métodos: Recopilación de los datos del nuevo registro "on-line" de NPD del grupo NADYA-SENPE en el período 2004-2005. Resultados: Durante el año 2004 se registraron 70 pacientes con NPD (23 hombres y 47 mujeres) pertenecientes a 14 centros hospitalarios. La edad media de los pacientes mayores de 14 años fue de 53,7 ± 14,87 años (m ± DS) y de 6 ± 2,83 años para los menores de 14 años. La enfermedad de base más frecuente fue la neoplasia (24%) seguida de la isquemia mesentérica (19%). Los catéteres más utilizados fueron los tunelizados (75%). Las complicaciones más frecuentes fueron las sépticas relacionadas con el catéter, con una tasa de 0,98 infecciones/ 103 días. El tiempo de soporte nutricional fue superior a dos años en el 69% de los casos. El suministro de las soluciones de NPD y del material fungible fue proporcionado por las farmacias hospitalarias en el 81% y el 83%, respectivamente. El 54% de los pacientes presentaban un nivel de actividad normal. En la mayoría de los pacientes la causa de finalización de la NPD fue la transición a la dieta oral (41%), o el fallecimiento (28%). Durante el año 2005 se registraron 79 pacientes con NPD (33 hombres y 46 mujeres), pertenecientes a 14 centros hospitalarios. La edad media de los mayores de 14 años fue de 52,39 ± 14,21 años y de 6,5 ± 5,21 años para los menores de 14 años. La enfermedad de base más frecuente fue la neoplasia (22%), seguida de la isquemia mesénterica (15%). El 63% de los pacientes utilizaron catéteres tunelizados. Las complicaciones más frecuentes fueron las sépticas relacionadas con el catéter (1,14 infecciones/ 103 días). El tiempo de soporte nutricional fue mayor a dos años en un 51% de los pacientes. El suministro de las soluciones de NPD y del fungible fue en el hospital en el 76% y 81%, respectivamente. El nivel de actividad de los pacientes con NPD fue normal en el 50%. Los motivos más frecuentes de finalización del tratamiento fueron la transición a dieta oral/ enteral (41%) y el fallecimiento (31%). Conclusiones: Hemos observado un ligero descenso en el número de pacientes registrados con NPD durante el período 2004-2005, posiblemente en relación con el cambio del registro. Las características generales de los pacientes son similares a las de años anteriores. Se aprecia un aumento en la tasa de complicaciones sépticas relacionadas con el catéter en el año 2005 (AU)

Objective: To report the results of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group of the years 2004 and 2005. Material y methods: We summarized the data of the new on-line HPN registry of the NADYA-SENPE group for the period 2004-2005. Results: During the year 2004, 70 HPN-patients (23 males and 47 females) were registered from 14 hospitals. Mean age of adults was 53,7 ± 14,87 years (m ± SD) and 6 ± 2,83 years for those younger than 14 years. The most frequent etiologies of the intestinal failure were neoplasia (24%) and mesenteric ischaemia (19%). Tunneled catheters were used in 75% of the patients. The catheter related infections were the most frequent complications, with a rate of 0,98 episodes/103 days. In 69% of the cases the nutritional support was maintained for more than 2 years. HPN solutions and disposables were supplied by the hospital pharmacy in 81% and 83%, respectively. Up to 54% of the patients had a normal activity level. The most frequent reasons to end HPN treatment were the transition to oral intake (41%), or exitus (28%). During the year 2005, 79 patients (33 males and 46 females) were registered from 14 hospitals. Mean age of adults was 52,39 ± 14,21 years and 6,5 ± 5,21 years for those younger than 14 yrs. The most frequent etiologies of the intestinal failure were neoplasia (22%), and mesenteric ischaemia (15%). Tunneled catheters were used in 63% of the patients. The catheter-related infections were the most frequent complications, with a rate of 1,14 episodes/103 days. In 51% of the cases the nutritional support was maintained for more than 2 years. HPN solutions and disposables were supplied by the hospital pharmacy in 76% and 81%, respectively. Up to 50% of the patients had a normal activity level. The most frequent reasons to end HPN treatment were the transition to oral/enteral feeding (41%) and exitus (31%). Conclusions: We have observed a mild decrease in the number of HPN patients registered in the period 2004-2005, probably related to the change of the registry. The characteristics of the patients are similar to previous years. We have observed an increase in the septic catheter related complications in the year 2005 (AU)

Conclusiones del III Foro de Debate SENPE. Soporte nutricional especializado: aspectos éticos / Conclusions of the III SENPE debate forum on specialized nutritional support: ethical issues

Conclusiones del III Foro de Debate SENPE-Abbott sobre diferentes aspectos éticos del soporte nutricional especializado en el paciente hospitalizado y en el domiciliario y ambulatorio. Se profundiza en el principio de equidad dependiendo de la localización geográfica, en las indicaciones tanto como terapia primaria y como cuidados paliativos y, en el consentimiento informado (AU)

Conclusions of the III SENPE-Abbott Debate Forum on several ethical issues of specialized nutritional support in hospitalized patients and outpatients. An insight in the principle of equity is given depending on geographical location, in its indications both as a primary therapy and palliative care, and in informed consent (AU)

Preparación, métodos y pautas de administración de la nutrición parenteraldomiciliaria. Seguimiento de los pacientes. Educación a pacientes y cuidadores / No disponible

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