Introduction Nutritional support in the care of children with threatening or limiting diseases is based on improving their nutritional status and quality of life. Malnutrition is common in these patients due to swallowing disorders, maldigestion or malabsorption, and to chronic diseases with increased energy expenditure, losses or requirements.
Methods A descriptive, retrospective analysis of patients with life-threatening or life-limiting diseases receiving Enteral Nutrition (EN) from 2000 to 2016, admitted to a Paediatric Palliative Care/Home Hospitalisation Unit, has been performed.
Results 188 patients have been treated. The mean age was 2.8 years (IR: 24 days-15.8 years). The most frequent indications were: swallowing disorders (42%), malnutrition (13.8%) and failure to thrive (12.2%).
According to the classification of the Association for children with life threatening situation or terminal situation and their families:
• Group 1 (Diseases for which curative treatment may be feasible but may fail): 23.9% (heart disease 75.5%, cancer 17.8%)
• Group 2 (Diseases for which premature death is anticipated, but intensive treatment may prolong good-quality life and participation in normal childhood activities): 26.6% (Gastrointestinal (GI) diseases and malformations 48%)
• Group 3 (progressive diseases for which treatment is exclusively palliative): 21.3% (57.5% advanced or metastatic cancer, 20% neuromuscular diseases)
• Group 4 (severe, non-progressive neurological impairment resulting in vulnerability and complications that may lead to premature death): 28.2% (39.6% hypoxic encephalopathy)
Enteral feeding was performed through a nasogastric tube in most patients (83%), requiring gastrostomy in 23.4%.
During this time period, 49 patients (26%) died in relation to their underlying disease except for one due to surgical complication of the gastrostomy.
Conclusions Neurological and oncological patients represent the most frequent pathologies requiring EN. In our study, children with congenital heart disease represent the third pathology in frequency, above GI diseases. Nutrition, along with symptom control, is one of the most important aspects of treating patients with limiting or life-threatening situations, half of which will require specialised palliative care.
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