Given the increasing prevalence and significant morbidity of pediatric ulcerative colitis (UC), it is imperative that we understand and define all knowledge gaps related to this disease. Adult data suggest that despite improved outcomes with newer medications, surgical outcomes have deteriorated. In children and adolescents with UC, surgical indications and outcomes are not well defined, making shared decision-making challenging. Using data from ImproveCareNow (ICN), PEDSnet, and the Pediatric Health Information System (PHIS) and employing methodologies frequently used by my mentors, we will test the hypothesis that earlier colectomy in UC results in better medical and patient-reported outcomes. This study aims to: 1) characterize current practice in timing of colectomy using the two surrogate metrics of time between diagnosis and colectomy and cumulative medication exposure prior to colectomy; 2) identify risk factors for medical and patient-reported outcomes following colectomy; and 3) understand patient perceptions related to the risks and benefits of colectomy versus prolonged medical management. This work will inform shared decision-making when discussing the role of colectomy at the bedside. Furthermore, the results will provide preliminary data for a subsequent funding application to evaluate different treatment strategies for children with UC.
