Delayed diagnosis and surgical intervention of intestinal malrotation can lead to unresolved gastrointestinal symptoms: Findings from a patient-reported registry.

INTRODUCTION

Intestinal malrotation is a rare congenital anomaly with highly variable clinical presentations and potentially devastating consequences when diagnosis is missed. Surgical intervention is considered definitive management, yet many patients continue to experience gastrointestinal symptoms after surgical intervention. This study examined whether time to diagnosis or factors related to surgical treatment were associated with unresolved gastrointestinal symptoms.

METHODS

We used patient-generated data from the national IMPOWER registry. We categorized registrants by duration of symptoms (one month for children; five years for adults) prior to diagnosis until surgical treatment and determined whether duration was associated with postoperative gastrointestinal symptoms among pediatric (<18 years) and adult (18+ years) registrants. We examined associations between unresolved symptoms and age at diagnosis, malrotation with or without volvulus, bowel resection, and additional surgical procedures.

RESULTS

Among pediatric registrants, 60% (n = 45) reported gastrointestinal symptoms following surgical intervention, but there was no difference by duration of symptoms prior to diagnosis. Among adults, 78% (n = 65) reported any gastrointestinal symptoms following surgical intervention. Those who had symptoms for more than 5 years had significantly more abdominal pain (73.5%), difficulty tolerating foods (53.1%), constipation (55.1%), and reflux (36.7%). When examining those with unresolved symptoms before and after surgical intervention, there was no difference based on presence of volvulus or bowel resection.

CONCLUSIONS

A large proportion of adult and pediatric registrants had ongoing gastrointestinal sequalae. Adult patients with symptoms longer than 5 years were more likely to report certain gastrointestinal symptoms after treatment. Therefore, providers should anticipate that patients may need postoperative follow-up with specialists for unresolved gastrointestinal issues.