Dietetic Department, Great Ormond Street Hospital for Children NHS Trust, London, UK.
Dermatol Clin. 2010 Apr;28(2):289-301, x. doi: 10.1016/j.det.2010.01.010.
Optimization of resistance to infection, growth, sexual maturation, wound healing, and provision of the best possible overall quality of life are important management goals in children with epidermolysis bullosa. However, all these goals rely on the maintenance of optimal nutritional status, and achieving this is extremely challenging in the severe types of the disease. Strategies to improve nutritional status have the best chance of success when the dietitian or nutritionist works as an integral member of the multidisciplinary team and is well informed of patients' situations, family dynamics, and prognoses. Even the best-coordinated dietetic interventions may exert only limited impact.
优化抗感染能力、促进生长发育、促进性成熟、促进伤口愈合，并提供尽可能最佳的整体生活质量，是大疱性表皮松解症患儿的重要管理目标。然而，所有这些目标都依赖于最佳营养状态的维持，而在疾病的严重类型中，实现这一目标极具挑战性。当营养师或营养学家作为多学科团队的一个组成部分，充分了解患者的情况、家庭动态和预后时，改善营养状况的策略最有可能取得成功。即使是最协调的饮食干预措施也可能只产生有限的影响。
