Background Food protein-induced enterocolitis syndrome (FPIES) is a delayed type of food allergy, most often seen in infancy. We aimed to estimate its incidence, to describe common food triggers and the patient journeys of this rare but serious condition.
Design We undertook a prospective epidemiological survey of FPIES using the British Paediatric Surveillance Unit.
Setting UK and Ireland.
Participants A survey of all paediatricians over 13 months between January 2019 and February 2020.
Main outcome measures 204 cases were reported, 98 (48%) meeting case definition, giving an incidence of 0.006% for England based on 93 cases.
Results 98 patients reported 135 trigger foods, 27% (26 of 98) had multiple food triggers. Common food triggers included cow’s milk (24%, 33 of 135), fruits and vegetables (19%, 26 of 135), hen’s egg (16%, 22 of 135) and fish (14%, 19 of 135). In 46% (41 of 90), the initial trigger food had been ingested three or more times before diagnosis, with a median diagnostic delay of 7.9 months (3.0, 17.3). Half (50 of 98) were admitted, yet only 5% (5 of 98) received appropriate acute treatment with ondansetron. Most cases were diagnosed by an allergy specialist (74 of 98, 76%), within a median of 7.5 (3.0, 13.3) miles from home.
Conclusion The incidence of FPIES was significantly lower than expected across the whole of the British Isles. Most reports were of cases local to specialist allergy centres, with delays in diagnosis. This suggests under-recognition of FPIES in frontline clinical setting where education of healthcare professionals is required to improve recognition, earlier diagnosis and treatment.
- allergy and immunology
- paediatric emergency medicine
Data availability statement
No data are available.
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GS and CA are joint first authors.
Twitter @goallergy, @nic@sheffkids65
Contributors GS and CA contributed equally to this paper. GS and ME-L designed and executed the study as lead investigators. GS undertook data collection and liaison with reporters. CA undertook analysis of the data and wrote the paper with GS and ME-L. All other authors made substantial contributions to the design of the study, interpretation of data and in the drafting and critical revision of the paper. All authors gave final approval of the version published.
Funding The study was supported by an award from the Midlands Asthma and Allergy Research Association, Leicester, UK.
Competing interests NAA reports regional study leave support from Nutricia and Mead Johnson, and personal fees from Reckitt Benckiser, during the conduct of the study. ME-L reports personal fees from Danone Nutricia, Mead Johnson, Novartis, DBV technologies and Nestle, outside the submitted work; and he is chair of BSACI Registry for Immunotherapy (BRIT) that receives unrestricted grant funding from ALK Albelo, Stallergenes Greer and Allergy Therapeutics. JH reports grants and personal fees from Aimmune Therapeutics, grants from DBV Technologies and Johnson & Johnson, outside the submitted work. He is president of Irish Association of Allergy and Immunology and co-chair of Irish Food Allergy Network, which receive unrestricted financial support for educational activities from pharmaceutical and infant formula companies. LJM reports lecture, travel and accommodation fees from Danone Nutricia, Mead Johnson and Regeneron; is on advisory board of Danone Nutricia and Novartis Principle; and chief investigator for commercial clinical trials for Danone Nutricia and Regeneron. GS reports personal fees from Nutricia and personal fees from DBV technologies, outside the submitted work.
Provenance and peer review Not commissioned; externally peer reviewed.
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