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Understanding Long-Term Outcomes for Children With Anorectal Malformation

Understanding Long-Term Outcomes for Children With Anorectal Malformation 1024 683 Katie Brind'Amour, PhD, MS, CHES

Researchers finally have high-quality data about the trajectory of continence outcomes — and key predictors for quality of life — across childhood for children with anorectal malformations.

For many parents of children with an anorectal malformation (ARM), the primary goal is for the child to be “clean and dry” — able to manage bowel movements without accidents, wearing normal underwear — by the time they start kindergarten.

“A lot of focus has been put on that kindergarten goal, but no one has ever looked to see if they’re not continent by age 5, will they never be continent? Or do they just need more time?” says Richard Wood, MBChB, FCPS(SA), chief of the Department of Pediatric Colorectal & Pelvic Reconstructive Surgery at Nationwide Children’s Hospital and long-time ARM surgeon and researcher.

Dr. Wood and colleagues from the Nationwide Children’s Center for Colorectal and Pelvic Reconstruction (CCPR) and The Royal Children’s Hospital in Australia recently published long-term continence and quality-of-life data from 910 patients aged 2-19 with ARM.

The study revealed that children have a good chance of gaining bowel control long-term, even if it doesn’t happen by the time they start school; about half of children with an ARM are continent at age 5, which increases to about 70% in patients aged 6-12 and to 82% in children over 12.

“Parents were often left thinking that if their child wasn’t clean and dry at age 5, they would be stuck on enemas for life,” says Dr. Wood. “Now we have good data to show that things get better over time — they may just need a bridge through elementary and middle school. And most importantly, there are benefits of continuing to try to be dry and clean.”

This takeaway is especially important in light of the study’s quality-of-life findings, which revealed that patients with ongoing soiling despite enemas or laxatives had scores about 20 points lower than those who were clean on enemas or who were continent without the need for enemas.

Continuing to offer trials for continence on laxatives each summer can give kids the opportunity to shift away from enemas and learn to sense when their bowel is ready for emptying.

“We counsel families differently now,” says Dr. Wood. “If we can have them clean by the time they start school, that’s great. But if they need to continue on enemas for a while and do a laxative trial each summer, that’s worth trying, because they have a really good chance at getting clean with time, and that has a big impact on quality of life.”

Earlier intervention or management by a specialty ARM program may also improve outcomes — children managed from the get-go at Nationwide Children’s or The Royal Children’s Hospital had better continence outcomes than children who were referred there after initial treatment elsewhere.

The study also demonstrated that type of ARM was the primary predictor of continence, with more moderate and complex ARMs resulting in lower continence rates. The child’s sacral ratio — a severity measure for the degree of underdevelopment of the sacrum historically used to predict continence — did not reliably predict outcomes.

The Nationwide Children’s CCPR has additional studies underway in this population, including pelvic floor biofeedback training and other interventions to accelerate the path to continence for older children with ARM. They continue to follow their cohort to learn more about the natural history of ARMs, quality of life as patients age and outcomes in early adulthood.

The CCPR offers remote, on-site and hybrid bowel management programs for families coping with ARM, as well as in-person or telehealth visits with a dedicated pediatric psychologist. The psychologist proactively assists with the psychosocial challenges associated with continence difficulties in school-aged children and can meet with patients from 41 states, even if the child is not otherwise treated through the CCPR.

“We’re exploring multiple ways to get them better faster,” says Dr. Wood, who says the study was the culmination of more than a decade of research and the first large outcomes study in this population. “We want to make sure we’re not just keeping kids healthy but that they have a good quality of life — that’s a very meaningful outcome.”

 

 

Reference:

Wood RJ, Srinivas S, Trajanovska M, Collis BJ, Lim R, Fuchs M, Dajusta D, Westgarth-Taylor C, Halaweish I, Gasior AA, Levitt MA, Hutson JM, King SK. Patient-reported outcomes of Children with an Anorectal Malformation. Ann Surg. 2024 Dec 18.

Image credit: Adobe Stock

About the author

Katherine (Katie) Brind’Amour is a freelance medical and health science writer based in Pennsylvania. She has written about nearly every therapeutic area for patients, doctors and the general public. Dr. Brind’Amour specializes in health literacy and patient education. She completed her BS and MS degrees in Biology at Arizona State University and her PhD in Health Services Management and Policy at The Ohio State University. She is a Certified Health Education Specialist and is interested in health promotion via health programs and the communication of medical information.

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