Characterization of patients with medically unexplained intolerance to enteral feeding treated with home parenteral nutrition: A descriptive cohort study

BACKGROUND AND AIMS: Dutch intestinal failure centers are increasingly confronted with patients started on total parenteral nutrition because of reported intolerance to enteral feeding without meeting clinical criteria for intestinal failure. This study aimed to describe clinical characteristics, medical consumption, and treatment status of patients with medically unexplained intolerance to enteral feeding treated with home parenteral nutrition. METHODS: We performed a descriptive cohort study in three intestinal failure expert centers in the Netherlands. We identified adult patients on total parenteral nutrition without a medical explanation for intolerance to enteral feeding via an electronic medical record search. We investigated patient characteristics, diagnostic procedures, and treatments these individuals had undergone. We also evaluated the impact of caring for these patients on physicians, using a questionnaire. RESULTS: 78 patients on total parenteral nutrition and with medically unexplained intolerance to enteral feeding were analyzed. Most patients were female (91%), 80% were ≤45 years at the start of gastrointestinal complaints, 63% were on opioids, and in 83% discontinuation of total parenteral nutrition was not achieved. The impact on treating physicians was rated as at least very burdensome. CONCLUSION: Treating patients with medically unexplained intolerance to enteral feeding with total parenteral nutrition is challenging for involved professionals in Dutch intestinal failure expert centers. This mainly concerns relatively young, female patients, most using opioids, and weaning off total parenteral nutrition is not successful in most cases. We suggest using caution when initiating total parenteral nutrition in patients with unexplained enteral intolerance before consultation with and/or assessment at an expert center.