Quality of life issues: parenteral nutrition to small bowel transplantation–a review

Parenteral nutrition (PN) has given life to patients with chronic intestinal failure who would otherwise have died. Home parenteral nutrition has improved the quality of life for many children. However, morbidity from this therapy remains significant with complications of line sepsis, lack of venous access, hepatic dysfunction, and pulmonary embolism. These complications are common in younger children. Detailed discussion must take place with the family regarding risks and benefits of PN. In those children developing complications of PN, intestinal transplantation is a logical extension of treatment. Early referral of patients for assessment is vital because significant mortality occurs when liver disease is established. Time is needed to counsel families on the potential benefits and risks of this treatment, including the physical and emotional demands made on the child and family. Overall worldwide survival for isolated small bowel transplantation is currently 50% and for combined small bowel and liver transplantation 40%. Significant complications are rejection, sepsis, and lymphoproliferative disease. Postoperative management can be complex and prolonged; child and parents require a great deal of physical and emotional support. The burden of care for parents decreases significantly after the first year. Small bowel transplantation offers a realistic alternative to PN. The choice of treatments is influenced by expected quality of life, which is just beginning to be evaluated.