A Global Call for Data to Improve Outcomes for Colorectal Conditions

The International Center for Colorectal and Urogenital Care (ICCUC) at Children’s Hospital Colorado has the largest database in the world for patients with congenital colorectal conditions. To add to this wealth of information and help improve the way the world treats children surgically with colorectal conditions, ICCUC leaders have launched a new worldwide data collection initiative.

Andrea Bischoff, MD, Director of the ICCUC, and Luis De La Torre, MD, Assistant Director of the ICCUC, are leading a global survey to get more information about surgical outcomes for children with colorectal conditions, in particular anorectal malformations and Hirschsprung disease. Colorectal surgery around the world typically has higher reoperation rates than other types of surgeries, and Drs. Bischoff and De La Torre believe they can help lower those reoperation rates and improve the quality of the initial surgeries these patients receive by looking closely at this extensive compilation of data.

At the time this article was published, they have 119 surgeons and 624 patients participating from 82 different hospitals in 46 different countries for their survey on anorectal malformations. For the survey on Hirschsprung disease, they have 69 surgeons and 236 patients participating from 50 different hospitals in 34 different countries.

By identifying what is currently being done or not done, Drs. Bischoff and De La Torre hope to target specific quality improvements to address those deficiencies that the data will expose. They currently have the largest database in the world for patients with congenital colorectal conditions, with more than 4,500 patients that have been operated on or reoperated on by their team.

“Unfortunately,” Dr. Bischoff says, “doctors have to have experience with reoperations to learn how to prevent the mistakes that lead to those reoperations. This data is valuable because it shows us what we need to continue working on.”

Getting the initial surgery right can have a lifelong impact for patients. “Patients with anorectal malformation have one chance to receive the correct operation,” says Dr. Bischoff. “A reoperation may restore the anatomy but, unfortunately, does not restore the original prognosis for bowel control that the patient was born with.”

Armed with this extensive data, our researchers will be able to suggest meaningful changes for surgeons worldwide, decreasing the number of patients born with a good prognosis for bowel control but who, due to mistakes, end up with complications like fecal incontinence for life.

Drs. Bischoff and De La Torre are seeking more hospitals to take part in their survey. Learn more about the survey or sign up.