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Food protein-induced enterocolitis syndrome in the British Isles
  1. Gary Stiefel1,
  2. Cherry Alviani2,
  3. Nadeem A Afzal3,
  4. Aideen Byrne4,
  5. George du Toit5,
  6. Audrey DunnGalvin6,
  7. Jonathan Hourihane4,7,
  8. Nicola Jay8,
  9. Louise Jane Michaelis9,10,
  10. Michel Erlewyn-Lajeunesse2
  1. 1Paediatric Allergy, Leicester Children's Hospital, Leicester, UK
  2. 2Paediatric Allergy, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  3. 3Paediatric Gastroenterology, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  4. 4Children's Health Ireland, Dublin, Ireland
  5. 5Paediatric Allergy, Guy's and St Thomas' NHS Foundation Trust, London, UK
  6. 6School of Applied Psychology, University College Cork, Cork, Ireland
  7. 7Paediatrics, Royal College of Surgeons in Ireland, Dublin, Ireland
  8. 8Paediatric Allergy, Sheffield Children's NHS Foundation Trust, Sheffield, UK
  9. 9Paediatric Immunology and Allergy, Great North Children's Hospital, Newcastle upon Tyne, UK
  10. 10Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
  1. Correspondence to Dr Michel Erlewyn-Lajeunesse, Paediatric Medicine, University Hospital Southampton NHS Foundation Trust, Southampton SO16 6YD, UK; mich.lajeunesse{at}soton.ac.uk

Abstract

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.

  • epidemiology
  • allergy and immunology
  • hypersensitivity
  • paediatric emergency medicine

Data availability statement

No data are available.

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Footnotes

  • 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.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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