Quality of Life Improvements Post Transplant
Improved transplant survival rates have focused more attention on finding ways to make recovery less difficult and give children a quality of life vastly better than what patients could expect a decade earlier.
The most difficult period of recovery for child and family is typically the first year after transplantation. As the child’s condition improves, improvement in the child’s quality of life typically follows.
Quality of Life Improvements Three Years Post Transplant
Studies of pediatric intestinal transplant patients at Children’s Hospital of Pittsburgh of UPMC suggest that the quality of life for most patients markedly improves within three years after transplantation.
- More than 80 percent of pediatric intestinal patients who are school-aged at three years post-transplant return to school at the appropriate grade level.
- The number of patients who needed a catheter declined sharply from 100 percent during the first year of recovery to 15 percent by the third year post transplantation.
- Nearly 73 percent of patients no longer needed total parenteral nutrition (TPN)* and received all of their calories by mouth three years after their transplant. In the first year of recovery, only 20 percent of patients were able to take in all of their calories by mouth.
- About 15 percent of patients required an ileostomy in the third year, compared to 60 percent during the first year of recovery.
- Gastrostomy tube use fell from 40 percent of patients to 27 percent by three years post-transplant.
- The number of patients in need of occupational therapy decreased from 60 percent in the first year of recovery to 8 percent in the third year.
- About 8 percent of Children's intestinal transplant patients needed physical therapy three years after transplant, compared to 60 percent in the first year of recovery.
“They have a lot of catching up to do at first,” says Beverly Park, MSN, CRNP, clinical nurse specialist at Children’s Hospital. “Most of these children have spent the majority of their young lives in the hospital rather than the home environment. They have had to endure many invasive procedures and operations and also have IV catheters, drainage tubes or ostomies. They have not had the opportunity to play, interact with family and experience childhood in the same way that other children experience in the home. After they are discharged from the hospital and return home, they steadily improve both physically and mentally.”
*Total parenteral nutrition, or TPN, is a means of providing protein, fats, carbohydrates, fluid and vitamins to the body through a special solution given through a vein into the bloodstream.
References
Kosmach-Park, B., Iurlano, K., Baird, C., Mazariegos, G., Sindhi, R., Abu-Elmagd, K., Reyes, J. Current status of pediatric intestine transplant recipients: care requirements and patient outcomes. Children’s Hospital of Pittsburgh, Starzl Transplantation Institute. VII International Small Bowel Transplant Symposium, Sept 12 - 15, 2001; Stockholm. Abstract #03.
