Multidisciplinary team provides
better care for kids with
Patients who lack a significant portion of their bowels often fail to thrive and require a complex combination of treatments, including surgery, parenteral nutrition and physiotherapy. Therapies have traditionally resulted in long hospital stays, liver damage and repeat infections, having lifelong implications for health and affecting social and family life.
“By creating a team dedicated to the treatment of intestinal failure, we have standardized our management approach and optimized continuity of care,” says Dr. Paul Wales, director of the GIFT program and a SickKids staff surgeon. “Families have become more involved in the day-to-day care of their child and are finding better access to the expertise that they require.”
GIFT began in November 2002 as a research group looking to develop best practice standards for the treatment of intestinal failure. It is multidisciplinary, with representation from SickKids’ General Surgery, Gastroenterology, Neonatology, Nursing, Clinical Nutrition, Social Work, Physiotherapy, Palliative Care and Transplantation programs.
Members of the GIFT team meet weekly to discuss individual inpatient cases and develop treatment plans. The outpatient clinic was established in January 2005 and cares for patients who have transitioned home on parenteral nutritional support. Now the largest and most comprehensive program of its kind in Canada, GIFT is involved with more than 80 patients.
“Intestinal failure is relatively rare. We are fortunate at SickKids to have such a large and diverse patient population, allowing us to identify gaps and draw meaningful conclusions about the way we treat kids,” says Dr. Wales. “Our goal is to make steady improvements to the quality of care that we provide.”
The GIFT program has done just that. A combination of surgical advancements, adjustments to clinical nutrition protocols and an improved integration of services have rendered some impressive breakthroughs. In neonates and infants with intestinal failure from short bowel syndrome, septic events have been minimized and the length of intensive care unit stays have decreased by 20 per cent. More children are tolerating enteral feeding. Most importantly, children experiencing liver failure are making it onto the transplant list sooner. The result has been a 36 per cent increase in the number of transplants performed and a more than 50 per cent decrease in the number of deaths from liver failure (22 per cent to 11 per cent). These numbers improve every year. In 2006, no child with intestinal failure died of liver failure under the care of the GIFT program.
A formalization of the program has further promoted the exchange of ideas across institutions and invaluable treatment options have been encountered in the process. Serial transverse enteroplasty (STEP), a bowel lengthening surgery first developed by colleagues in Boston, was adapted by GIFT staff for use in newborn babies with intestinal atresia. The surgery has been performed in 15 SickKids patients to date, resulting in a significant improvement in growth, feeding tolerance and gut absorptive capacity post-surgery.
GIFT continues translational research into intestinal failure using an animal model with colleagues in Alberta. Moving forward, the team hopes to improve the integration of care across centres and expand its prospective database into a national registry of intestinal failure patients to better track treatment and outcomes.
“The results of our program are extremely encouraging. In just three years we have shown vast improvements in the quality of care that we are offering our patients. Now that our infrastructure is mature, we are in a position to do exciting interventional studies that improve intestinal adaptation or minimize liver dysfunction,” says Dr. Wales. “We are confident that an expansion of the program will bring continued success.”