Background Food Protein induced enterocolitis (FPIES) is a non-Immunoglobulin E(Ig-E) mediated gastrointestinal food allergy affecting mainly children. It has a significant impact on quality of life and despite being a potentially life-threatening allergy, awareness is poor and the diagnosis is often missed or delayed, as ‘it does not look like an allergy’ and IgE-based allergy tests are usually negative. There is very limited data on parent/patient perspectives of the unmet clinical or research needs in FPIES that can affect clinical outcomes.
Objectives To identify unmet research and clinical needs, as perceived by patients with FPIES and carers of children with FPIES, to deliver value-based patient care.
Methods An online survey was disseminated in English through the USA-based patient/parent association ‘FPIES Foundation’, FPIES UK, Food Allergy and Anaphylaxis Australia, Food Allergy Canada and Allergy Italia, between May 2020 and July 2020. Participants included adults with self-reported FPIES or a carer of a child (0–18 years) with FPIES. The survey collected demographic data of patients, incidence of acute and chronic FPIES, parent and patient perspectives of unmet research needs and psychological effect of FPIES on families, including ranking a number of potential needs from 1 (not essential) to 9 (extremely essential). The survey contained closed and open-ended questions; the latter were analysed using thematic analysis.
Results A total of 285 respondents completed the survey, of which 255 (89.5%) were parent/carer of a child with FPIES (0–18 years), 21 (7.4%) were adults with FPIES and 9 (3.2%) were adult with FPIES themselves and a parent/care-giver of a child with FPIES. Female participants comprised 93% (265/285) of the total and 49.5% (141/285) belonging to the age group of 35–44 years.
Majority (76%, 182/239) of children had FPIES to multiple foods, the commonest culprit food being grains other than gluten i.e. rice/oats (62%, 148/239). 48.75% (117/240) of children suffered from chronic with acute FPIES followed closely by children with acute FPIES only (46.25%, 111/240).
The top research priorities identified by participants (in decreasing order of importance) were 1.) Creating awareness about FPIES amongst health care professionals(HCP), in particular emergency doctors and nurses; 2.) Education of medical students on FPIES, 3.) The development of a prognostic and predictive test for FPIES, 4) An established care plan for continuity of care following visit to emergency and 5) A diagnostic test to diagnose FPIES acutely against common differentials.
The major themes identified in the data were 1.) Creating awareness about FPIES amongst HCP and in community, 2.) FPIES is psychologically stressful 3.) FPIES leads to social restriction due to fear of accidental ingestion leading to severe symptoms 4) FPIES is financially stressful and should be covered by health insurance and 5) Lack of stringent food-labelling.
Conclusions Increasing awareness amongst healthcare professionals to avoid misdiagnosis/delay and lack of a prognostic/diagnostic test for FPIES were the key research needs. Further research and clinical improvement strategies should be focused on these areas.
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