Percutaneous endoscopic gastrostomy in cystic fibrosis: patient acceptance and effect of overnight tube feeding on nutritional status

BACKGROUND: Malnutrition remains a common problem in cystic fibrosis (CF) patients, despite pancreatic enzymes and hypercaloric diet advice. When oral supplementation fails, additional overnight gastrostomy tube-feeding is a therapeutic option. METHODS: In our centre gastrostomy tube feeding is proposed when weight for height drops below 85% despite intensive dietetic counselling. All the CF patients at our centre (n = 11) receiving gastrostomy tube feeding were evaluated for changes in nutritional status and pulmonary function. Complications of percutaneous endoscopic gastrostomy were inventarised and patients older than 7 years and all the parents were asked to fill in a questionnaire concerning subjective well-being with gastrostomy supplemental feeding. RESULTS: The patients received 40% of the recommended daily allowances (RDA) for energy by tube feeding. Total daily energy intake increased by 30%. Within 3 months this resulted in a significant improvement in nutritional status expressed as percentage of ideal weight for height or body mass index z-score. After 6 months a significant catch-up growth was detectable. Pulmonary function remained stable. The complications were local irritation (n = 4), night sweating (n = 1) and bed-wetting (n = 1). The gastrostomy was well accepted. CONCLUSION: Gastrostomy appears to be a good and safe way to improve nutritional status, growth and mood of the CF child. As decreased pulmonary function plays a crucial role in the growth of the CF child, full normalisation of growth pattern is not achieved despite catch-up. Gastrostomy tube feeding should perhaps be used earlier to optimalise growth.