S.V. Raney1,2, C. Dalton1,2, S.A. Martinez3, K. Malloy3, K. Corcoran4, C.J. Hunter1,2 1University of Oklahoma Health Sciences Center, Pediatric Surgery, Oklahoma City, OK, USA 2University of Oklahoma Health Science Center, General Surgery, Oklahoma City, OK, USA 3University of Oklahoma Hudson College of Public Health, Biostatistics And Epidemiology, Oklahoma City, OK, USA 4West Virginia University, Sociology And Anthropology, Oklahoma City, OK, USA
Introduction: Intestinal malrotation is a rare, but potentially devastating congenital failure of small bowel fixation. Although its most severe form requires emergent operative intervention, patients can also be asymptomatic and diagnosis can often be delayed. Additionally, long-term postoperative outcomes remain poorly characterized. However, there is evidence that patient experience suggests otherwise when considering conversations and posts in patient social media support platforms. We aim to further delineate whether delays in diagnosis of intestinal malrotation have an effect on persistence of symptoms in the postoperative period.
Methods: The Intestinal Malrotation Patient Outcomes and Wellness Registry (IMPOWER) includes a comprehensive baseline assessment of adult and pediatric patients diagnosed with intestinal malrotation. Recruitment was initiated via online social media and patient communities. Patients or caregivers of child patients with a previous diagnosis of intestinal malrotation were eligible to participate. Once enrolled, patients received a baseline assessment along with a six-month interval follow-up survey. Only patients who received surgical intervention were included. Participants were stratified by duration of symptoms prior to diagnosis (less than one month, one month to five years, and greater than five years). Patient responses were then analyzed based on the presence and type of persistent gastrointestinal symptoms. Additionally, the groups were compared based on the severity and frequency of gastrointestinal symptoms after surgery. A p-value of <0.05 was statistically significant.
Results: There were 272 participants who completed the baseline assessment at the time of analysis. 221 had surgical intervention completed. Patients diagnosed and treated within one month of symptom onset were less likely to have persistent gastrointestinal symptoms in the long-term postoperative period (p=0.005). Of those who reported postoperative symptoms, abdominal pain and constipation were more likely in the group diagnosed later than 5 years after symptom onset. Patient’s diagnosed and treated within one month of symptom onset had significantly less severe and less frequent symptoms than those who had symptoms for one month to five years and greater than five years prior to diagnosis and management (p=0.007 and 0.023, respectively).
Conclusion: Patients with persistent gastrointestinal symptoms after surgical intervention for intestinal malrotation is associated with an initial delay in diagnosis and treatment. Furthermore, patients who experience persistent postoperative gastrointestinal symptoms have more frequent and severe symptoms compared to the preoperative setting if there was a delay in the initial diagnosis or treatment. This emphasizes the need for physicians to develop a high index of suspicion and low threshold for confirmatory evaluation and surgical intervention of intestinal malrotation.