Gastrostomy for epidermolysis bullosa

Summary Epidermolysis bullosa (EB) is a life‐long, genetic blistering disorder which can affect internal surfaces as well as the skin. People with severe EB find eating difficult for many reasons including sore mouth, decayed teeth, difficulty swallowing and poor appetite. At the same time they need more protein and calories than normal, to repair skin which is constantly blistered, bleeding and breaking down. In other situations, eating problems can be bypassed by a “nasogastric” feeding tube passed through the nostril and into the stomach, but the sticky tape needed to hold it in place can damage EB skin. An alternative is a “gastrostomy” tube inserted directly through the belly skin into the stomach by a small operation and kept in place by an internal balloon so no tape is required. This paper from Brazil reviews the medical literature to find out whether a gastrostomy tube actually benefits EB patients. Due to the rarity of EB there have been no randomised controlled trials, and of 641 relevant papers, only 7 provided sufficient detail about patients and outcomes to address this question. They conclude that nutritional status usually, but not always improves, and even if it worsens some patients report better life quality, presumably because it relieves the stress of eating. Complications led to removal of the gastrostomy tube in 10% of patients. The accompanying commentary points out that more data is required to answer the many remaining questions about gastrostomy regarding technique, timing and diet as well as outcomes.