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The psychosocial impact of food protein-induced enterocolitis syndrome

Published online: June 19, 2020

Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE, cell-mediated food allergy that typically presents 1 to 4 hours after ingestion of the culprit food with protracted vomiting, followed by watery, sometimes bloody diarrhea. Little is known about the psychosocial impact of the condition and there remains a need to better characterize the social and emotional burdens of living with FPIES and its effect on quality of life among caregivers and children. The goal of this study was to characterize health-related quality of life, stress, worry, and anxiety among caregivers and affected children recruited from a geographically diverse population.   

To address these knowledge gaps, Maciag and colleagues collaborated with the International FPIES Association (I-FPIES) and retrospectively analyzed psychometric surveys completed by 410 caregiver-members of I-FPIES, regarding 441 children with FPIES. The Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, Beck Anxiety Inventory, Food Allergy Self-Efficacy Scale for Parents and Spence Assessments were completed by caregivers and analyzed. Eleven affected children between ages 7 and 15 years completed the Spence Child Anxiety Scale. The results of this study were recently published in The Journal of Allergy and Clinical Immunology: In Practice.  

There was significant burden, stress, worry and anxiety among caregivers of children with FPIES. Compared to published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher, and self-efficacy was significantly lower.  Several characteristics of caregivers and children were significant risk factors for increased burden in FPIES. Lower income was associated with poorer caregiver health-related quality of life and lower self-efficacy. Greater number of food groups avoided correlated moderately with poorer health related quality of life, and higher anxiety among preschoolers and parents. Avoiding cow’s milk due to FPIES was associated with poorer caregiver health-related quality of life, higher stress, and lower self-efficacy. Caregivers whose child was not attending daycare/school due to FPIES had lower health-related quality of life and higher stress and worry.

The results of this study highlight the significant psychosocial burden FPIES places on families and identified which caregivers may be at risk of greater psychological distress due to the condition. Interventions that address parent and child anxiety and parental self-efficacy, while also being sensitive to financial barriers and the number and type of foods avoided, are likely to have the greatest impact on families.

The Journal of Allergy and Clinical Immunology: In Practice is an official journal of the AAAAI, focusing on practical information for the practicing clinician.

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