Original

First discussion forum of the Spanish Society for Parenteral and Enteral Nutrition (SENPE)

Problems of home artificial nutrition in Spain

Co-ordinator: Dr A. García de Lorenzo y Materos.
Speakers: J. Álvarez, E. Camarero, D. Cardona, S. Celaya, AI de Cos, P. P. García Luna, M. León, J. M. Moreno, A. Pérez de La Cruz, M. Planas y C. Van den Berghe

CONCLUSIONS

The ultimate goal of this Discussion Forum is to generate a document setting out the conclusions which will be presented to the Advisory Committee of the Inter-territorial Commission of the Ministry of Health and Consumer Affairs.

1. As health professionals devoted to the practice of Home Artificial Nutrition (HAN), we feel that this is a necessary but under-used therapy in Spain when compared with countries around us.

2. The problems detected include the following:

. The interpretation of the Ministerial Order dated June 2nd, 1998, regulating Home Enteral Nutrition (HEN) has given rise to different applications in our country. The evolution of HEN has shown that the current regulations do not take into account all of the clinical reality of health-care.

. In addition, as a result of the current legal vacuum, it is of primary importance that the creation be demanded of regulations governing the provision of Home Parenteral Nutrition (HPN).

3. After discussing aspects involved with the evolution and models of HAN, its current status in Spain and the countries around us in terms of pathologies and incidence, with the problems of the current registers, legal issues, and the levels of liability, dispensation and monitoring, as well as issues related to finance, we feel that:

. The awareness of HAN must be encouraged among Clinical Services dealing with patients capable of benefiting from this form of therapy.

. The awareness of HAN must be encouraged among Scientific Societies with specialists providing health care to patients capable of benefiting from this form of therapy.

. The list of pathologies that are candidates for this therapy must be reviewed together with those where this treatment has been shown to be effective in order to update the list.

. An HAN training programme must be set up to target the professionals working in Primary Health Care.

. The legal regulation of HAN must take into account the provision of health care and monitoring at home.

. The prescription of HAN must always be made by an authorized doctor expert in nutrition.

. After establishment of the indication, it is considered mandatory to have metabolic-nutritional monitoring of patients with HAN.

. The system for dispensing this therapy must be aimed at facilitating users´ convenience as well as at reducing the cost of both diets and administration systems.

. Access to diets must be facilitated for patients when away from home.

. With a view to the registration of health-care products, current knowledge on EN Products and Oral Products must be re-defined.

. Patients´ association must be involved in the promotion of HAN.

4. The SENPE, through its Working Group on Home and Out-Patient Artificial Nutrition (NADYA in its Spanish acronym), undertakes:

. To develop and unify information and registration systems allowing us to obtain the truest possible information on the reality of the country in this regard.

. To draw up common tools for assessing the results on health, including quality of life.

. To develop multimedia training tools helping with the education of patients and carers.

. To design studies analyzing the different problems detected (low incidence of HAN, ...).

On the other hand, the NADYA Working Group will draw up a document considering:

. The updating of the HEN Clinical Practice Guide, including pathologies, products and consumable material capable of being financed.

. The creation of an HPN Clinical Practice Guide.

. The definition of quality criteria which must be met by units or teams providing HPN and which will be used for both accreditation and auditing of their clinical activity.

. A draft informed consent document (with legal validity) for all HAN processes.