Introduction: The number of children receiving prolonged home enteral nutrition (HEN) is increasing. However, precise information on the incidence and prevalence of HEN in Spain is lacking. Consequently, the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition created a patients' register (NEPAD). The aim of the present study was to analyze the results of the first year of the NEPAD register (2003).
Material and methods: The NEPAD is an on-line register that gathers information on the indications for HEN, route of access, type of diet and duration of nutritional support. Quantitative data are expressed as mean and standard deviation, and qualitative data as percentages.
Results: In 2003, 124 children from 6 hospitals were registered. The mean age at the beginning of HEN was 3.6 years. The underlying disease was gastrointestinal in 20%, neurological or mental retardation in 20%, cystic fibrosis in 14.5%, tumor in 11%, innate error of metabolism in 10%, congenital cardiac disease in 6%, severe primary malnutrition in 6%, and other causes in 13%. A nasogastric tube was used as the first route of access in 56%, and gastrostomy was used in 42%. Sixty percent of the children received continuous nocturnal enteral nutrition and 90% used an infusion pump. The type of feeding consisted of blenderized natural food in 14%, polymeric pediatric formula in 50%, and infant formulae in 18%. On December 31st, 84 children continued to receive enteral nutrition (68%).
Conclusions: Despite the efforts made to maintain the on-line national register, it has been underused in its first year of existence (2003). Patients with gastrointestinal or neurological diseases constitute the main group of patients in the register. There is a slight preference for the use of nasogastric tube over gastrostomy.