Long-Term Outcomes and Quality of Life for Children Treated With Antegrade Continence EnemasLong-Term Outcomes and Quality of Life for Children Treated With Antegrade Continence Enemas https://pediatricsnationwide.org/wp-content/uploads/2023/11/060220ds0259-Peter-Lu-1024x601.jpg 1024 601 Pam Georgiana Pam Georgiana https://pediatricsnationwide.org/wp-content/uploads/2023/07/May-2023.jpg
- November 28, 2023
- Pam Georgiana
ACE treatment can lead to long-term clinical and quality-of-life improvement in children with defecation disorders.
For about 10-15% of the children who experience chronic constipation or other defecation disorders, the usual behavioral modification treatments and oral medications don’t help. These disorders can significantly impact their quality of life, yet other treatment options are limited.
Antegrade continence enema (ACE) treatment involves a minor surgical procedure that creates an opening in the abdominal wall and connects to the patient’s colon. This opening allows for external flushing of the colon.
There are two different procedures that allow ACE treatment:
- A Malone appendicostomy attaches the appendix to the belly button.
- A cecostomy tube involves direct placement of a tube through the abdominal wall into the colon.
During both of these procedures, doctors create an opening into the colon. After healing, the patient flushes their colon through the opening using a catheter or indwelling tube with a liquid solution on a regular basis, typically daily. In many cases the belly button hides the opening, allowing the child the freedom to do most activities of daily living without hindrance.
ACE treatment has become an established pediatric treatment for refractory defecation disorders for around 20 years. Compared to rectal enemas, ACE treatment allows older pediatric patients more independence and privacy because they can perform the flushes without help. However, there is little research on the efficacy of the treatment or how the treatment affects the quality of life for these young patients who may have to do these daily flushes for several years.
Peter L. Lu, MD, pediatric gastroenterologist at Nationwide Children’s and associate professor of pediatrics at The Ohio State University College of Medicine, and a team of doctoral students tracked 38 Nationwide Children’s patients who received ACE treatment in real time to measure both clinical outcomes and quality of life. The results were recently published in The Journal of Pediatric Gastroenterology and Nutrition.
“We wanted to find out how current patients and their families are experiencing life after ACE treatment so that we can help future patients and their families know what to expect,” Dr. Lu says.
The team tracked the patients from baseline through 60 months, using the Pediatric Quality of Life Inventory Gastrointestinal Symptoms Module (PedsQL-GI) and monitoring gastrointestinal symptoms, adverse events, and patient satisfaction. Twenty-two children were diagnosed with functional constipation, ten with an anorectal malformation, and six with Hirschsprung disease.
“We found that no matter the cause of constipation, most patients reported a significant improvement in their quality of life even after five years,” Dr. Lu reports.
About one-third of the patients reported complications, such as granulation tissue, with 10% experiencing a complication requiring another procedure. The majority of parents and children reported that they would “probably” or “definitely” choose ACE again.
“For kids who haven’t responded to usual treatment, ACE seems to provide lasting improvement over the long term. Instead of needing help with daily rectal enemas, they can flush their colon themselves. They may also start to recognize the natural bodily feelings of “having to go.” This can improve their quality of life and promote autonomy,” Dr. Lu says.
This study was a first step towards more research, says Dr. Lu. Studies regarding the best ways to treat children with refractory chronic constipation and other defecation disorders are in progress.
Baaleman DF, Vriesman MH, Lu PL, et al. Long-Term Outcomes of Antegrade Continence Enemas to Treat Constipation and Fecal Incontinence in Children. Journal of Pediatric Gastroenterology and Nutrition. 2023;77(2):191-197. doi:10.1097/MPG.0000000000003833
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