CAPS - Educational Outcomes in School Age Children with a History of Hirschsprung’s Disease - Michael Cowap

Next we'll hear from CAPS, the Canadian Association of Pediatric Surgeons. These presentations have definitely all brought their A game and so can't wait to see what caps has in store. First up, we have Michael Koep from the University of Manitoba in Manitoba, Canada, and following Dr. Pam Choy from Children's Hospital at University of California, Los Angeles will share her thoughts. Allow me to paint a picture for you. After nine months of nervous excitement, you finally get to be face-to-face with your child. You're ecstatic. It's been a long road, but now the fun begins. A couple of days go by and something seems off. Your newborn has yet to have a bowel movement, is throwing up, and has a round-looking belly. You go to your doctor, and after an exam which may result in an explosion of gas and stool, your doctor says exactly what you don't want to hear. We need to do more tests. Your heart sinks. What happened? What did I do wrong? Absolutely nothing, the doctor says. After another test, it's confirmed. Your child has Hirschsprung disease. Hirschsprung disease, you think? What does that even mean? Your doctor explains it's a loss of innervation to a section of bowel. Sometimes it's associated with genetic syndromes such as Down syndrome, but that doesn't appear to be the case here. And it can be fixed, but requires a surgery that involves cutting that section of bowel out. You have a weird sense of relief mixed with fear. Now you know what the issue is and that it can be fixed, but you're still afraid for what's to come and the surgery for your child. Fast forward slightly, and the surgery is complete and successful. Another relief. But you're told your child may still have some ongoing issues with constipation, incontinence, and occasional abdominal pain. Again, you have that unfortunate feeling, relief that the surgery is over, but still worry for what's to come for your child. The first couple of years go by well. There's repeated trips to the doctor's office, and still the ongoing issues you were warned about, but you've become seasoned in dealing with these situations. Then all of a sudden, a new fear enters your life. School. You've been warned about the issues with constipation and pain, but no one ever said what would happen in school. You remember the doctor saying that Hirschsprung is associated with syndromes like Down syndrome. Does that also mean that your child might struggle in school? You schedule a doctor's appointment and are worried what they'll say. Luckily, your doctor shows you data from our study that compared children with Hirschsprung disease similar to your child's to their peers in real-world assessments. The study showed that while there may be some delay in the beginning in the preschool assessment, once children with Hirschsprung start school, that does not appear to be a significant difference between them and their peers in assessments that include reading and number skills. And there isn't even a significant difference in graduation from grade 12. You're relieved. And finally, it doesn't come with a sense of dread. All right, thanks so much for the stay current team for inviting me to be a moderator for this awesome event. Now, I'm here to tell you all, you should vote for this paper. So often as surgeons, we have only been focused on the problem that we're going to be addressing um in the operating room. When we know that these diseases are so much bigger than that. Just last week, I had a scenario when I was talking to parents about their newborn son, first time parents, um, who was just diagnosed with Hirschsprung's disease. And it went exactly how this presentation went. Their fears, their hopes, and their concern about school. And I was so pleased when I could actually reference this presentation and this paper to try to alleviate some of their fears. So thank you so much for this study. We all need to remember that even as surgeons that neurodevelopmental outcomes are just as important to parents as what we do directly in the operating room. I also loved how in when in your methodology, you you tried to do case controls, um, utilizing, um, and utilizing some social determinants of health and tried to account for those things. Some questions I had were about, um, you know, how you compare these groups. So for example, in middle school and elementary school, you use standardized tests, um, are these standardized tests that are exactly the same throughout the entire country of Canada? Um that's a great question. Uh data was only specifically from Manitoba and using a Manitoba health uh repository. I I can't speak to um other provinces as if the tests would be exactly standardized. Um, they're just standardized within within each province as far as I know. Sure. And, you know, in your later years, when you say in high school, you just your you determinants where, you know, graduation from a certain grade or graduation from high school, does that account for things like if, um, if a child was perhaps homeschooled versus if they had graduated from a public school or a private school? Uh, our data does include, um, public school, private school and homeschooling. The only, um, data sets that were missed that were not included in the, um, repository were, uh, First Nations and indigenous, uh, schools. And finally, my question is is that, you know, we all know that not all Hirschsprung disease is created equal. Um, you know, some kids get their, uh, pull through and they do fine, they never have any problems. Other kids, you know, seem to consistently have problems with entertis or may need reoperation. Um, was there anything in your study that accounted for that? Um, not, uh, not in this study, we didn't account for specific, um, how the disease is affecting each child individually. Um, so we just, uh, match them based on, um, like, like you said, based on, uh, being male and socioeconomic status. But again, you know, I think that this study is is truly very impactful and, um, you know, has an immediate, um, effect on like, you know, the times what kind of things we can tell our patients. And I'm very curious about if you have any, um, next steps moving forward with this study. Yeah, the next steps um would be uh using the data that we have, um, because the data was from 1997 to 2012, so we can keep following some of these patients uh moving forward to see if as they progress throughout the school system, um, and then to see if in future studies if maybe using early, uh, educators is helpful in alleviating some of the disparities we found within the preschool students. Uh well, thank you so much, Michael. Everybody, you got to vote for this paper. It's truly impactful and I think it's it's awesome. Thank you very much. Nominal paper. Um, we got 30 seconds left for any comments. There um was a question from Mark Wilcon that said, any subset analysis of long segment? No, we did not include a subset analysis of long segment. Sorry. Okay. Any other comments? Perfect timing. All right, end of the round. Uh, please step back to your corner and, uh, we're going to bring it to the next uh the next paper.