Nutrición Parenteral Domiciliaria en España 2011 y 2012; informe del grupo de nutrición artificial domiciliaria y ambulatoria NADYA / Home parenteral nutrition in Spain 2011 and 2012; a report of the home and ambulatory artificial nutrition group NADYA

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 (AU)

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 (AU)

Satisfaction with gastrostomy feeding in caregivers of children with homenenteral nutrition; application of the SAGA-8 questionnaire and analysis of involved factors / Satisfacción con la alimentación mediante gastrostomía en cuidadores de niños con nutrición enteral domiciliaria; aplicación del cuestionario SAGA-8 y análisis de los factores implicados

Aims: To assess the degree of satisfaction of caregivers of children with gastrostomy tube (GT) feeding through the structured questionnaire SAGA-8. Secondly, to evaluate if the parental satisfaction degree was related to several independent variables. Methods: A cross-sectional observational study was performed in 92 caregivers of children with GT feeding and chronic diseases. The following data was obtained: caregiver satisfaction with GT feeding (SAGA-8), age at GT placement, anthropometric data, length and mode of nutritional support, family demographic characteristics and caregiver psychological status. Results: All primary caregivers were mothers. High satisfaction with GT feeding was expressed by 82.6% of families. The simplicity of the system was emphasized by 87%, and 85.9% were very satisfied with the support received from the hospital staff. 73.9% of mothers acknowledged their child's nutritional status had improved and 89.1% rated the enhancement family's overall situation. Moreover, 75% of mothers reduced feeding-time, and 68.5% reported less respiratory infections. Finally, 71.7% of mothers recognized that they would have implemented this technique earlier. Caregiver satisfaction was positively correlated with age at GT placement and length of treatment, and both variables explained the 19.4% of the satisfaction variance. No correlation with anthropometric data, nutrition support mode, family demographic characteristics or caregiver psychological status was observed. Conclusions: The SAGA-8 questionnaire is a simple, specific, straight-forward tool to evaluate parental/caregiver degree of satisfaction with GT feeding and facilitates effective monitoring of the intervention. Lengths of HEN and precocious age at GT placement are responsible for most of parental satisfaction (AU)

Objetivos: Valorar el grado de satisfacción de los cuidadores de niños con alimentación mediante gastrostomía aplicando el cuestionario estructurado SAGA-8. Segundo, evaluar si la satisfacción parental guarda relación con diversas variables independientes. Métodos: Se realizó un estudio observacional, transversal en 92 cuidadores de niños con enfermedades crónicas que recibían alimentación mediante gastrostomía. Se analizaron los siguientes datos: satisfacción de los cuidadores con la alimentación por gastrostomía (SAGA-8), edad de implantación de la gastrostomía, parámetros antropométricos, tiempo de soporte nutricional, características demográficas familiares y estado psicológico del cuidador. Resultados: Todos los cuidadores eran madres. La mayoría (82,6%) manifestaron una elevada satisfacción con la alimentación mediante gastrostomía. El 85,9% resaltó la sencillez de la técnica sintiéndose el 85,9% muy satisfecha con el apoyo ofrecido por el centro. Un 73,9% de las madres percibió mejoría nutricional en su hijo, señalando el 89,1% un mayor bienestar familiar. Además, el 75% de las madres comunicaron una disminución en el tiempo de alimentación y el 68,5% una reducción en la morbilidad respiratoria. Finalmente, el 71,7% de las madres reconoció que hubieran aceptado antes el procedimiento. La satisfacción se correlacionó significativamente con la edad de implantación de la gastrostomía y con la duración del soporte nutricional, explicando ambos factores el 19,4% de la varianza de la satisfacción. No se encontró correlación con datos antropométricos, tipo de soporte nutricional, características demográficas familiares ni con el estado psicológico del cuidador. Conclusiones: El cuestionario SAGA-8 es sencillo, específico y fácil de aplicar para evaluar el grado de satisfacción de los padres/cuidadores con la alimentación mediante gastrostomía contribuyendo a su monitorización. La duración del soporte nutricional y la precocidad en la implantación de la gastrostomía son los responsables principales de la satisfacción de los cuidadores (AU)

El registro de Nutrición Artificial Domiciliaria y Ambulatoria de la Sociedad Española de Nutrición Parenteral y Enteral; análisis DAFO / The registry of home artificial nutrition and ambulatory of the Spanish Society of Parenteral and Enteral Nutrition: SWOT analysis

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 (AU)

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 (AU)

Registro del año 2010 de Nutrición Parenteral Domiciliaria en España: Grupo NADYA-SENPE / Home parenteral nutrition registry in Spain for the year 2010: NADYA-SENPE

Objetivos: Comunicar los datos del Registro del Grupo NADYA SENPE de Nutrición Parenteral Domiciliaria NPD en España del año 2010. Material y métodos: Estudio descriptivo de la base de datos del Registro de ámbito nacional de NPD del grupo NADYA-SENPE (1 de enero de 2010 al 31 de diciembre de 2010). Para el cálculo de prevalencias se utilizó los últimos datos publicados por el Instituto Nacional de Estadística. Resultados: Se registraron 148 pacientes procedentes de 23 hospitales, 86 mujeres (58,11%) y 9 niños (6,08%). La edad media de los 139 pacientes adultos fue de 53,06 ± 15,41 años. La duración media de la NPD fue de 316,97 días/paciente. El diagnóstico más frecuente en los niños (menores de 14 años) fue intestino corto traumático con 5 casos (55,55%) y en los adultos la neoplasia en tratamiento paliativo 29 (19,59%). El motivo de la indicación de la NPD fue el síndrome de intestino corto en 74 ocasiones (47%). La vía de acceso más frecuentemente registrada fue el catéter tunelizado en 36 (22,78%) casos seguido del reservorio en 13 (8,23%) y otras vías en 3 ocasiones (1,90%). Se registraron 23 infecciones relacionadas con el catéter (82,14%), lo que representa 0,49/1000 días de NP y todas ellas ocurrieron en los adultos. A lo largo del año finalizaron 24 episodios de NPD, la causa más frecuente fue el paso a la vía oral en 12 episodios (50%). Se registró que los pacientes tenían una actividad normal en 70 episodios de NPD (44,30%) con una total autonomía en 88 de episodios (55,69%). Se identificaron 39 (24,68%) posibles candidatos para trasplante intestinal. Conclusiones: El número de pacientes registrados es discretamente inferior al del año anterior, aunque el número de hospitales participantes es el mismo. La complicación más frecuente sigue siendo la infección relacionada con el catéter aunque ha disminuido su incidencia respecto a años anteriores, presentándose la tasa más baja desde la creación del registro. Las diferencias en la participación en el registro observadas por Comunidades Autónomas lleva a plantear el desarrollo de estrategias de implementación del registro. Se observa un aumento progresivo de la duración de los días de NPD a lo largo de los años que hace pensar en la cronicidad de algunos pacientes, pero nos obliga a estudiar la existencia de un posible factor de confusión, en el caso de que existiera un olvido de cierre de algún episodio por lo que se hace necesario actualizar el registro con sistemas de alertas periódicas que faciliten la revisión de los pacientes incluidos y optimice la validez del registro (AU)

Objectives: To report the Group Registry NADYA SENPE data about home parenteral nutrition (HPN) in Spain in 2010. Material and methods: A descriptive study of the database of the national registry of HPN of NADYA-SENPE (December 10, 2009 to December 10, 2010). For the calculation of prevalence the latest data published by the Institute National Statistics Office (01/01/2009) was used. Results: There were registered 148 patients from 23 hospitals, 86 women (58.11%) and 9 children (6.08%). The average age of the 139 patients older than 14 years was 53.06 ± 15.41 years. The average duration of HPN was 316.97 days/patient. The most common diagnosis in those younger than 14 years was short bowel traumatic with 5 cases (55.55%) and in those older than 14 years, palliative care cancer with 29 cases (19.59%). The reason for the indication for HPN was short bowel syndrome in 74 cases (47%). The access via most frequently recorded was tunneled catheter in 36 cases (22.78%) followed by implanted port-catheters in 13 cases (8.23%) and other pathways in 3 cases (1.90%). There were 23 catheter related infections (82.14%) which represented 0.49 /1,000 days of PN, all of which occurred in cases older than 14 years. During the year 24 episodes of HPN ended, the most frequent cause was the transition to oral nutrition in 12 episodes (50%). It was reported that patients had a normal activity in 70 episodes of HPN (44.30%) with complete autonomy in 88 episodes (55.69%). Some patients 39 (24.68%) were potential candidates for intestinal transplantation. Conclusions: The number of registered patients is slightly lower than the previous year, although the number of participating hospitals is the same. The most frequent complication remains catheter-related infection but its incidence has decreased from previous years, presenting the lowest rate since the creation of the record. Differences in participation in the registry observed in the Autonomous Communities causes the development of implementation strategies. There is a gradual increase in day length of HPN over the years, which suggests the chronic treatments of some patients and obliges to study the existence of a possible confounding factor, in case there is an oversight of closing an episode. Therefore, it is necessary to update the registry with warning systems that facilitate periodic review of the patients and optimize the validity of registration (AU)

Long-term home parenteral nutrition in children with chronic intestinal failure: A 15-year experience at a single Italian centre.

BACKGROUND AND AIMS: Chronic intestinal failure is a condition causing severe impairment of intestinal functions; long-term total parenteral nutrition is required to provide adequate nutritional support. METHODS: This is a 15-year follow-up study of paediatric patients with intestinal failure receiving long-term home parenteral nutrition. RESULTS: Thirty-six patients were included in the study, all aged <16 years. Total parenteral nutrition and home parenteral nutrition were administered respectively to 100.97 and 85.20 patients-year. Today, 12 out of 36 patients are still on parenteral nutrition. A total of 99 central venous catheters were inserted, for mean 2.75 catheters/patient. The overall incidence rates of catheter-related complications was 1.79 per 1000 days-catheter for sepsis and 3.37 per 1000 days-catheter for mechanical complications. Two multivariate Cox-models have been used to examine the role of some predictors for septic or mechanical complications. The only risk factor for septic complications was the indication for parenteral nutrition, and the only predictor of mechanical complications was the insertion period. CONCLUSIONS: Our experience in the treatment of paediatric patients with gastrointestinal diseases confirms that long-term parenteral nutrition has become a safe and appropriate method in the treatment of severe chronic intestinal failure.

Canadian home total parenteral nutrition registry: preliminary data on the patient population.

BACKGROUND: Long-term administration of home total parenteral nutrition (HTPN) has permitted patients with chronic intestinal failure to survive for prolonged periods of time. However, HTPN is associated with numerous complications, all of which increase morbidity and mortality. In Canada, a comprehensive review of the HTPN population has never been performed. OBJECTIVES: To report on the demographics, current HTPN practice and related complications in the Canadian HTPN population. METHODS: This was a cross-sectional study. Five HTPN programs in Canada participated. Patients' data were entered by the programs' TPN team into a Web site-based registry. A unique confidential record was created for each patient. Data were then downloaded into a Microsoft Excel (Microsoft Corp, USA) spreadsheet and imported into SPSS (SPSS Inc, USA) for statistical analysis. RESULTS: One hundred fifty patients were entered into the registry (37.9% men and 62.1% women). The mean (+/- SD) age was 53.0+/-14 years and the duration requiring HTPN was 70.1+/-78.1 months. The mean body mass index before the onset of HTPN was 19.8+/-5.0 kg/m(2). The primary indication for HTPN was short bowel syndrome (60%) secondary to Crohn's disease (51.1%), followed by mesenteric ischemia (23.9%). COMPLICATIONS: over one year, 62.7% of patients were hospitalized at least once, with 44% of hospitalizations related to TPN. In addition, 28.6% of patients had at least one catheter sepsis (double-lumen more than single-lumen; P=0.025) and 50% had at least one catheter change. Abnormal liver enzymes were documented in 27.4% of patients and metabolic bone disease in 60% of patients, and the mean Karnofsky score was 63. CONCLUSIONS: In the present population sample, the data suggest that HTPN is associated with significant complications and health care utilization. These results support the use of a Canadian HTPN registry to better define the HTPN population, and to monitor complications for quality assurance and future research.

[The planned home care transfer by a local medical support hospital and the introduction to home intravenous hyper alimentation--the making of a home care patient's instruction plan document].

It is important to offer continuous medical service without interrupting everyone's various job functions at the Tama Numbu-Chiiki Hospitals in order to secure the quality and safety of home medical care to patients and their families. From 1998 up to the present, home intravenous hyper alimentation (home IVH) has been introduced by individually exchanging information that was based on items such as clinical case, doctor and caregiver in charge of the day, and introductory information. Five years have passed since we started an introduction of home IVH, and it appears that the medical cooperation of home IVH between the Minami-tama medical region and its neighboring area has been established. Then, we arranged an examination of the past 2 years based on the 57 patients who elected to choose home IVH instruction. Consequently, we created "home IVH introduction plan document" in standardizing a flow from home IVH introduction to post-hospital intervention. Since November of 2003, the plan document has been utilized and carried out to 5 patients by the end of February in 2004. This home IVH introduction plan document was able to clarify the role of medical person in connection with the patient. Therefore, we could not only share the information, but also could transfer medical care smoothly from the hospital to the patient's home.

Why is high-tech healthcare at home purchasing underdeveloped and what could be done to improve it?

Executive Letter (95)5 initiated a change of health policy preventing general practitioners (GPs) from prescribing packages of "high-tech healthcare at home" (HTHC). From 1 April 1995, district health authorities were required to establish contracts to purchase such care. Several reasons were behind this policy change including the belief that contracting would improve service quality by encouraging competition between potential suppliers, securing better value for money, and establishing service specifications and monitoring mechanisms. Our survey of 98 health authorities, however, highlighted that contracting for home total parenteral nutrition, intravenous antibiotics for patients with cystic fibrosis, intravenous chemotherapy and continuous ambulatory peritoneal dialysis is largely undeveloped. The majority of districts contracted with historic providers and authorities freely admitted that they did not know whether they were obtaining value for money or a service of adequate quality. Only three districts had developed a strategy for purchasing HTHC as required by the Executive Letter, and only 17 had plans to re-examine their approach. Contracting for HTHC presents practical problems, including the complexity of the process and the significant time demands for efficient and effective contracting. Phase two of this research sought to produce a "guide to good practice" for health authorities wishing to re-examine and improve their purchasing. We conducted case study analyses in districts that had made effective progress and those that had encountered difficulties, drawing upon lessons learned. We reported our findings to the NHS Executive and supplemented this with a "toolbox" that included sample documents covering areas such as tendering, monitoring mechanisms, service specifications and different purchasing approaches.

Home infusion partners with managed care.

Managed care may play a large role in the reformed health care system. Home care of any kind provides a cost-effective means of health care and thus may be seen as a natural ally of managed care. In this example, a home infusion service demonstrates the ease of this alliance.

Home intravenous therapy: Part I--Issues.

Concerns related to providing home intravenous therapy were among the top ten clinical problems identified by Northwest Medicare-certified home care agencies in a 1986 survey. This paper addresses issues related to home intravenous therapy and provides lists of resources for the development of home intravenous therapy programs. Part I of the paper covers concerns related to intravenous therapy as expressed by home care agencies in the Northwest and synthesized the literature about home intravenous therapies. Survey results are presented, followed by a discussion of client and caregiver concerns. These include: discharge planning, client admission criteria and client and caregiver education. Standards, staffing, and staff education issues are discussed followed by sections on economics, marketing regulations and legal and ethical concerns. Finally, there is a discussion of issues related to specific types of intravenous therapies: parenteral nutrition, antibiotic therapy; chemotherapy; blood and blood component therapy and other less frequently used types of intravenous therapies. Each therapy is discussed with regard to complications, client and caregiver instruction and financial considerations. Part II of the paper is a resource guide which lists resources that agencies may use to develop a home intravenous therapy program. In the first section, national organizations and journals and books concerned with intravenous therapy are listed as well as journal articles, guidelines and guidebooks and client and provider educational materials. National and regional product and service representatives of intravenous therapy related companies are also listed. In the second section, addresses for the State Boards of Nursing are given for Alaska, Idaho, Montana, Oregon and Washington. Each state section includes a list of those agencies who indicated in the 1988 survey that they would be willing to share materials. In addition, product and service vendors of intravenous therapy supplies and equipment are listed for the State of Washington.

Artificial nutrition support for patients in the Cambridge Health District.

This paper describes the results of a one-year prospective survey of patients who received artificial enteral and parenteral nutritional support at home and in the hospitals of the Cambridge Health District. Enteral tube feeding accounted for most of the artificial nutritional support provided both in hospital and in the community. The findings of the study suggest that nutritional support is an important adjunct to the treatment of serious clinical disorders, and that the care of such patients can be improved by the establishment of a multidisciplinary enteral and parenteral nutrition team. Suggestions are made for establishing a structured home nutritional service.