RESEARCH & NEWS
PCPLC research is focused on Anorectal Malformations, Hirschsprung Disease, and severe constipation.
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Anorectal Malformations
A 2020 PCPLC study looked at patients with an anorectal malformation and compared them to patients with anorectal malformations and genital or urinary malformations. They found that the more complex group of patients were more likely to be born prematurely. They recommend counseling parents about this increased risk. See details and read the abstract on PubMed.
The PCPLC published a study of more than 800 children with rectoperineal or rectovestibular fistulas. Gynecologic anomalies were more common when children also had anomalies in two other areas. Areas included spine, limb, kidney, and heart. They recommend prompt screening for gynecologic anomalies in this case. See details about this study and read the abstract on PubMed.
The PCPLC studied fecal incontinence in children with anorectal malformation (ARM). Of the 509 patients studied, 24% had full bowel control. Being older was related to better control. The kind of insurance they had was also related. Gender or race didn't seem to matter. Further research is needed to improve care for this patient group.
A 2019 PCPLC study looked at two ways to measure the length of the urethra and common channel in girls with cloaca. Usually, an infant female has three separate openings for the vagina, urine, and stool. Instead, a girl with cloaca has a single ‘common channel’ exiting the body. The urethral and common channel lengths determine what surgery to perform. One way to measure the length is with an endoscope. An endoscope is a flexible tube with a camera. Another way to measure the length is with a 3D cloacagram. A cloacagram gives detailed 3D pictures. The study found that measuring with an endoscope was not accurate enough. They recommend that patients have a 3D cloacagram to help guide surgery. The study was published in The Journal of Pediatric Surgery. See details and read the abstract on PubMed.
The PCPLC studied how minor spinal cord issues (mSCD) impact bowel function in children with ARM. The study did not find a significant impact. Differences in screening and intervention for mSCD in these patients were found. Future studies should look at patients who get the same care. This may help understand the impact of mSCD on ARM patient outcomes.
Multi-institutional review of bowel management strategies in children with anorectal malformations
The PCPLC published a study about bowel management in patients with anorectal malformations. The study explains how patients are cared for based on the complexity of the malformation. The study also showed how care changes for patients with a sacrum or spine anomaly. See details about this study and read the abstract on PubMed.
Researchers looked at 98 children with cloacal exstrophy. Most did not undergo a colonic pull-through. Among those who did, only a small number had clean underwear. Kids with a longer colon might have a better chance of success with a pull-through procedure.
Rectal Prolapse Following Repair of Anorectal Malformation: Incidence, Risk Factors, and Management
A PCPLC study looked at rectal prolapse in kids who had surgery for anorectal malformation (ARM) repair. About 14% experienced prolapse after surgery. Boys and more complex ARM cases have a higher risk for prolapse. More research is needed to find the best ways to manage prolapse repairs. See details and read the abstract on PubMed.
Urinary continence disparities in patients with anorectal malformations
A 2022 PCPLC study looked at urine accidents in children with anorectal malformations. They found that accidents were less common in adopted children and children with public insurance such as Medicaid. The reason for this is not yet understood. See details and read the abstract on PubMed.
A 2021 PCPLC study looked at complications after surgery. The surgeries studied were for the treatment of rectoperineal and rectovestibular fistulas. These surgeries can be done within two weeks after birth, or they can be done later. The study found a similar number of complications when surgery was done early or later. They concluded that both are safe. See details and read the abstract on PubMed.
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Hirschsprung Disease
A 2022 PCPLC study about Botox to relax the anal sphincter muscles was published in the Journal of Pediatric Surgery. Botox is used to treat constipation in patients with Hirschsprung disease. The study found that the use of Botox varies widely. Botox was used more after redo surgery and in older patients. It was used less for Hispanic patients. We need guidelines to standardize and improve care for all individuals. See details about this study and read the abstract on PubMed.
The PCPLC published a study about enterocolitis in the European Journal of Pediatric Surgery. Enterocolitis is inflammation in the digestive tract that can happen before and after surgery in patients with Hirschsprung disease. Enterocolitis was found to be more common when a larger portion of the colon does not function properly to push stool through.
The PCPLC published a study about the quality of life for children with Hirschsprung disease or severe constipation. Each child’s quality of life was rated by the child and by their parent. Ratings from children with Hirschsprung disease were often different than ratings provided by their parents. See details about this study and read the abstract on PubMed.
A 2021 PCPLC study looked at bowel function after surgery for Hirschsprung disease. Surgery can be done in the first month of life, or it can be done later. 31% with surgery in the first month needed bowel management. 15% with later surgery needed bowel management. There are limitations to this study, but later surgery appears to be a good option. See details and read the abstract on PubMed.
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Severe Constipation
This research focuses on children with a particular colon issue receiving antegrade continence enemas (ACE). Out of 104 participants, 92% showed improvement after one year with ACE alone, while 7% required additional treatment involving colonic resection. Children with well-functioning pelvic floor muscles were less likely to need further treatment.
Over 400 children with constipation from an unknown cause were studied. The study found children with a developmental delay were more likely to have incontinence. Also, children with publicly subsidized insurance were also more likely to have incontinence. Finally, children from certain ethnic groups were offered different types of care. These findings highlight the need for continued efforts to address how social determinants of health affect access to colorectal care. See details about this study and read the abstract on PubMed.
In 2022, the PCPLC reported on how patients with severe constipation and a neurodiverse diagnosis manage their bowel. They found that a large portion of patients used antegrade enemas. Antegrade enemas are fluids that are put into the start of the large intestine through a tube in the abdomen. This helps a person with severe constipation pass stool. See details about this study and read the abstract on PubMed.
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Additional Research
Annual Pediatric Colorectal and Pelvic Learning Consortium (PCPLC) Scientific Meeting: Editorial
The PCPLC is focused on improving care for patients with Hirschsprung disease, anorectal malformation, or constipation. For more details read the abstract in the Journal of Pediatric Surgery.
Doctors do not always use the same words to describe children's colorectal issues. This can cause confusion for patients and their families. Also, colorectal issues in children aren't common, so it is hard to identify the best treatments. The PCPLC has agreed upon clear definitions that our research teams will use in future studies. Using common definitions will help researchers and doctors communicate more clearly. The PCPLC members feel this change will help work towards improved outcomes for all our patients.
The PCPLC was founded in 2016. The mission of the consortium is to improve the lives of people affected by colorectal or pelvic conditions. They pursue this goal through research and education.
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Active PCPLC Studies
Core Data Project
The Core Data Project is a study that collects demographic and clinical data about patients from multiple institutions. These data allow researchers to better understand characteristics of patient groups and to describe treatment practice patterns across many institutions. Researchers are also able to use these data to investigate patient outcomes and identify patient and treatment characteristics associated with better outcomes for patients. The study currently includes patients with Hirschsprung Disease, Anorectal Malformations, and severe constipation.
Patient- and Parent-Reported Outcome Measures
The Patient- and Parent-Reported Outcome Measures study adds the unique perspective of patients and their families to clinical data collected in the Core Data Project. In this study, patients and their families respond to surveys about the patient's functional status and quality of life. Surveys include the Pediatric Quality of Life Inventory, the Baylor Continence Scale, and the Cleveland Clinic Constipation Scoring System. This study, in combination with the Core Data Project, allows researchers to investigate the relationship between various treatment options and the associated outcomes as experienced by patients and their families.
PCPLC
Pediatric Colorectal and Pelvic Learning Consortium (PCPLC)