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versión impresa ISSN 0212-1611
Nutr. Hosp. vol.25 no.5 sep./oct. 2010
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
L. Gómez-López1, C. Martínez-Costa2, C. Pedrón-Giner3, C. Calderón-Garrido4, V.M. Navas López5, A. Martínez Zazo6 y J.M. Moreno Villares7
1Division of Pediatric Gastroenterology, Hepatology and Nutrition. Hospital Sant Joan de Déu. University of Barcelona. Spain.
2Gastroenterology and Nutrition Unit. Department of Pediatrics, School of Medicine and Hospital Clínico. University of Valencia, Spain.
3Division of Gastroenterology and Nutrition. Hospital Infantil Universitario Niño Jesús. Madrid, Spain.
4Deparment of Personality, Assessment and Psychological Treatment. Faculty of Psychology. University of Barcelona, Spain.
5Division of Pediatric Gastroenterology, Hepatology, and Nutrition. Hospital Materno Infantil. Málaga. Spain.
6Department of Pediatrics. Hospital Infanta Sofía. San Sebastián de los Reyes, Madrid, Spain.
7Nutrition Unit. Hospital Doce de Octubre, Madrid, Spain
Abstract 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.
Key words: Home enteral nutrition. Online pediatric register NEPAD.
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.
Palabras clave: Nutrición enteral domiciliaria. Registro pediátrico online. NEPAD.
Home enteral nutrition (HEN) is administered outside the hospital. It is apt for patients whose illness is under control but who still require nutritional support. Its objectives are to ensure nutritional support in the home and shorten hospital stays thereby reducing treatment costs1, hospitalism and potential complications of nosocomial infection2. It also facilitates reincorporation of patients and their families into school, family, work and social environments and increases survival rate and the quality of life of both children3 and their caregivers4.
Home enteral nutrition began in the 70s and since then various strategies have been undertaken to widen its range, reduce costs and improve patient care. However, it is difficult to know the exact impact of HEN, especially in pediatrics, where few cases are reported. There are many reasons: differences in patient followup practices depending on the socio-political ambit and the hospital, lack of agreement on the definition of EN and whether or not it encompasses oral feeding, failure to register cases in data-bases, this not being a compulsory requirement5. It should be noted that the EN records are essential because they reflect its prevalence, provide information on specific indications, effectiveness and incidence of complications. They are also useful for resource planning and to quantify those in use.
In most countries HEN registers include both pediatric and adult patients, while in Spain there are two separate registers:
1. The National Register of Adults NADYASENPE (www.nadia-senpe.com). This is an online data-base registering patients since 1992. The latest data from 2007 reveal a prevalence of 113 patients/million inhabitants6. This figure is probably lower than the actual prevalence in Spain as it is lower than that recorded in other studies conducted in certain Spanish autonomous regions, in Italy (mean prevalence of 128 patients/million inhabitants/year), in the European register of European Society of Parenteral and Enteral Nutrition (ESPEN HAN http://www.espen.org) (163 patients/million inhabitants), the British record kept by the British Artificial Nutrition Survey, 2007 (453 patients /million inhabitants in adults and children, not including oral EN) and United States in the period 1989-1992 (415 patients/million inhabitants).
2. Register of Pediatric Outpatient and Home Enteral Nutrition (NEPAD). This is the online database kept by the Spanish Society of Gastroenterology, Hepatology and Pediatric Nutrition (SEGHNP). Launched in 2003, it has been approved by the Ethics Committee of the Hospital Infantil Universitario Niño Jesús in Madrid and the inclusion of patients is optional and meets all the requisites of the Data Protection Act 15/99. Located at http://www.gastroinf.com/ of SEGHNP, which makes available all additional material for users: informed consent (requesting patient's inclusion in the database), and user's manual. In 2003, NEPAD registered only 124 children from six Spanish hospitals7 while in the last assessment undertaken in 2007 (fig. 1 and table I) both the number of patients and hospitals had increased8. Although the data are similar to those recorded in other countries, they are probably biased due to the small number of centers they include and the differences among the patients' characteristics. Other pediatric records reflect a higher prevalence, for example the UK BANS records 5250 patients from 253 centers.
Hospital malnutrition and nutritional support are issues of general concern; however, the legal framework and criteria for funding HEN vary firm country to country. In Spain, this service has been regulated since 2nd June 1998 by the General Directorate of National Health Service and Inspectorate (Dirección General de Cohesión del Sistema Nacional de Salud y Alta Inspección), through the Advisory Committee for dietary product supply. Recently, the legal framework was updated in accordance with the Order Real Decreto 1030/2006. Dietary products eligible for financing, registered in the General Health Register of Food as dietary foods for special medical purposes, must be approved by a group of specialists, including pediatricians, in order to be listed as dietary products available (nomenclator) by Ministerial Order 3858/2006. In 1998, accompanying the regulation of HEN, guidelines for HEN good clinical practice were issued, which have recently been updated9. Prescription of HEN is usually made by specialists assigned to a hospital nutritional unit, provided the illnesses in question are listed as subject to HEN (Table II).
Psychosocial consequences of HEN
When a child is diagnosed with a chronic illness requiring nutritional support at home, this involves radical changes in family life, often implying extensive use of health resources and changes in family activity10. Therefore, when establishing HEN one should consider not only the technical aspects but also its impact on the behavioral, psychological and physiological repercussions of the caregivers. Furthermore, the burden of home care generally corresponds to the mother, with likely consequences for her health or social, cultural or professional capacity. A survey conducted in a Spanish hospital revealed the mother is the primary caregiver in most cases and up to 66% claimed to have given up or cut down their occupational activity. Few studies have been made into this impact of HEN on personal, family and social life, nor the potential improvements after its introduction. Currently, these circumstances are not sufficiently covered by health systems and hence the main issues still to be addressed by HEN programs are:
1. The delegation of responsibilities to patients and their caregivers. HEN requires the child's family to be able to take on the responsibility of providing care, receive training and adequate financial support. The Personal Autonomy and Dependent Care Law 39/2006 (http://www.saad.mtas.es/portal/) is trying to remedy the latter to some extent.
2. The weak link between primary and specialist care.
3. The importance of house-hold associated risks and the detection, management and/or prevention of complications.
4. The extent of use despite the lack of studies on cost-effectiveness.
5. The need for supervision by a multidisciplinary team (Grade A recommendation).
HEN is an increasingly used nutritional support service which enables patients and their families to return to their homes, thereby improving their socialization and "normalization-adaptation" of their way of life. For this to happen, professionals must provide optimal support and monitoring, with a focus on the family, from the moment this support is prescribed. Therefore, there is a need for a multidisciplinary team, which can carry out training and monitoring, making the dispensing of formulas and related equipment both simple and convenient for the patient and providing maximum collaboration with pediatricians in primary care.
Likewise, it is necessary to have a register of this service in order to know about the implementation of HEN in Spain, its use, resources required by our patients and the ability to request them from the corresponding authority. The NEPAD database has this goal; however, it is only useful if we acquire the habit of entering patient information systematically.
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Liliane Gómez López.
Hospital Sant Joan de Déu.
Passeig Sant Joan de Déu, 2
08950 Esplugues. Barcelona.