Shared Decision-Making in Food Protein–Induced Enterocolitis Syndrome

Food protein–induced enterocolitis syndrome (FPIES) is a non–IgE-mediated food allergy presenting with profuse vomiting, lethargy, and potential progression to severe dehydration and hypotension. Delayed-onset bloody diarrhea may also be a feature, though generally in neonates. FPIES can be misdiagnosed due to nonspecific symptoms and the fact that there is no laboratory test specific for the disease. There is currently very limited understanding of the FPIES pathophysiology. Clinical management relies mostly on case series, case reports, uncontrolled observational studies, and expert opinion rather than controlled studies and a plethora of mechanistic research. As a result, there are multiple areas in FPIES where care is preference-sensitive and dependent on patient values and preferences, given the lack of high-quality trials that clearly indicate a single best course of action. While in some vain this may signify major knowledge gaps and unmet needs in research and patient care, in another sense, this represents an opportunity to evolve patient care in a way that may be more tailored toward individual patient or family values and preferences through shared decision-making as the research continues to evolve. There has been increased recognition that the burden of FPIES on patients and families is substantial, and there is opportunity to take advantage of particular care options to help mitigate this burden. This rostrum wishes to discuss areas where current FPIES care can be evolved to incorporate a more contextualized, preference-sensitive approach, involving shared decision-making, to provide the optimal management to each individual patient.