Living with food allergies: the experiences of adult patients and caregivers

Alexandra F. Santos; Margitta Worm; Shoko Kurita; Tania Wong; Davide Contato; Elia Pirillo; A. Esther Esteban; Paolo Tassinari; Flavia Perna; R. Sharon Chinthrajah

doi:10.3389/falgy.2023.1272851

Living with food allergies: the experiences of adult patients and caregivers

Alexandra F. Santos^*, Margitta Worm, Shoko Kurita, Tania Wong, Davide Contato, Elia Pirillo, A. Esther Esteban, Paolo Tassinari, Flavia Perna, R. Sharon Chinthrajah^*

^*Corresponding author for this work

Women & Children's Health

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

Abstract

Background: Few studies have addressed how food allergy may impact differently on the daily lives of adults with food allergies and caregivers for food-allergic dependents. Objective: To explore similarities and differences in life experiences and unmet needs between individuals caring for a child with food allergy and adults with food allergy world-wide. Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between respectively people with food allergies and caregivers for people with food allergies, with experienced clinicians participating. Results: Sixteen individuals living with food allergies and nine caregivers took part in the two roundtables. Food avoidance and antihistamines were the most common treatments for food-allergic reactions in both groups. Caregivers reported greater burden of disease on affected individuals and families than did adult patients. Adult panelists considered autoinjectors easy to use but caregivers reported additional emotional stress thinking about autoinjector use. Caregivers described an ever-present fear of inattention and of overlooking a risk factor for a severe reaction, whereas adult panelists showed a determination not to let their food allergies interfere with living their lives. Both groups had safety-conscious attitudes to treatments, but adult patients emphasized convenience while caregivers prioritized reduced severity of reactions and eliminated fear. Both groups confirmed the need for improved, trusted sources of information, and for resources and training programs for any new therapies. Conclusion: The interactive exchange provided insights into differences between adult patients and caregivers, notably in fear and confidence in daily life, severity of disease impact, and unmet needs for treatments.

Original language	English
Article number	1272851
Journal	Frontiers in Allergy
Volume	4
DOIs	https://doi.org/10.3389/falgy.2023.1272851
Publication status	Published - 2023

Keywords

anaphylaxis
disease life experience
interactive dialogue
mode of action (MOA)
quality of life

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.3389/falgy.2023.1272851

Cite this

@article{c3b1f72c74504363ae08248b4f658cb5,

title = "Living with food allergies: the experiences of adult patients and caregivers",

abstract = "Background: Few studies have addressed how food allergy may impact differently on the daily lives of adults with food allergies and caregivers for food-allergic dependents. Objective: To explore similarities and differences in life experiences and unmet needs between individuals caring for a child with food allergy and adults with food allergy world-wide. Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between respectively people with food allergies and caregivers for people with food allergies, with experienced clinicians participating. Results: Sixteen individuals living with food allergies and nine caregivers took part in the two roundtables. Food avoidance and antihistamines were the most common treatments for food-allergic reactions in both groups. Caregivers reported greater burden of disease on affected individuals and families than did adult patients. Adult panelists considered autoinjectors easy to use but caregivers reported additional emotional stress thinking about autoinjector use. Caregivers described an ever-present fear of inattention and of overlooking a risk factor for a severe reaction, whereas adult panelists showed a determination not to let their food allergies interfere with living their lives. Both groups had safety-conscious attitudes to treatments, but adult patients emphasized convenience while caregivers prioritized reduced severity of reactions and eliminated fear. Both groups confirmed the need for improved, trusted sources of information, and for resources and training programs for any new therapies. Conclusion: The interactive exchange provided insights into differences between adult patients and caregivers, notably in fear and confidence in daily life, severity of disease impact, and unmet needs for treatments.",

keywords = "anaphylaxis, disease life experience, interactive dialogue, mode of action (MOA), quality of life",

author = "Santos, {Alexandra F.} and Margitta Worm and Shoko Kurita and Tania Wong and Davide Contato and Elia Pirillo and Esteban, {A. Esther} and Paolo Tassinari and Flavia Perna and Chinthrajah, {R. Sharon}",

note = "Funding Information: The author(s) declare financial support was received for the research, authorship, and/or publication of this article. Financial support for the roundtable and for publication was provided by Novartis Pharma AG (Basel, Switzerland). The roundtable participants received financial compensation for their voluntary participation at fair market value in line with local regulations in their respective countries. The authors had full control over the study design, analysis, interpretation of data, the writing of this article and the decision to submit it for publication. Publisher Copyright: 2023 Santos, Worm, Kurita, Wong, Contato, Pirillo, Esteban, Tassinari, Perna and Chinthrajah.",

year = "2023",

doi = "10.3389/falgy.2023.1272851",

language = "English",

volume = "4",

journal = "Frontiers in Allergy",

issn = "2673-6101",

publisher = "Frontiers Media S.A.",

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TY - JOUR

T1 - Living with food allergies

T2 - the experiences of adult patients and caregivers

AU - Santos, Alexandra F.

AU - Worm, Margitta

AU - Kurita, Shoko

AU - Wong, Tania

AU - Contato, Davide

AU - Pirillo, Elia

AU - Esteban, A. Esther

AU - Tassinari, Paolo

AU - Perna, Flavia

AU - Chinthrajah, R. Sharon

N1 - Funding Information: The author(s) declare financial support was received for the research, authorship, and/or publication of this article. Financial support for the roundtable and for publication was provided by Novartis Pharma AG (Basel, Switzerland). The roundtable participants received financial compensation for their voluntary participation at fair market value in line with local regulations in their respective countries. The authors had full control over the study design, analysis, interpretation of data, the writing of this article and the decision to submit it for publication. Publisher Copyright: 2023 Santos, Worm, Kurita, Wong, Contato, Pirillo, Esteban, Tassinari, Perna and Chinthrajah.

PY - 2023

Y1 - 2023

N2 - Background: Few studies have addressed how food allergy may impact differently on the daily lives of adults with food allergies and caregivers for food-allergic dependents. Objective: To explore similarities and differences in life experiences and unmet needs between individuals caring for a child with food allergy and adults with food allergy world-wide. Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between respectively people with food allergies and caregivers for people with food allergies, with experienced clinicians participating. Results: Sixteen individuals living with food allergies and nine caregivers took part in the two roundtables. Food avoidance and antihistamines were the most common treatments for food-allergic reactions in both groups. Caregivers reported greater burden of disease on affected individuals and families than did adult patients. Adult panelists considered autoinjectors easy to use but caregivers reported additional emotional stress thinking about autoinjector use. Caregivers described an ever-present fear of inattention and of overlooking a risk factor for a severe reaction, whereas adult panelists showed a determination not to let their food allergies interfere with living their lives. Both groups had safety-conscious attitudes to treatments, but adult patients emphasized convenience while caregivers prioritized reduced severity of reactions and eliminated fear. Both groups confirmed the need for improved, trusted sources of information, and for resources and training programs for any new therapies. Conclusion: The interactive exchange provided insights into differences between adult patients and caregivers, notably in fear and confidence in daily life, severity of disease impact, and unmet needs for treatments.

AB - Background: Few studies have addressed how food allergy may impact differently on the daily lives of adults with food allergies and caregivers for food-allergic dependents. Objective: To explore similarities and differences in life experiences and unmet needs between individuals caring for a child with food allergy and adults with food allergy world-wide. Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between respectively people with food allergies and caregivers for people with food allergies, with experienced clinicians participating. Results: Sixteen individuals living with food allergies and nine caregivers took part in the two roundtables. Food avoidance and antihistamines were the most common treatments for food-allergic reactions in both groups. Caregivers reported greater burden of disease on affected individuals and families than did adult patients. Adult panelists considered autoinjectors easy to use but caregivers reported additional emotional stress thinking about autoinjector use. Caregivers described an ever-present fear of inattention and of overlooking a risk factor for a severe reaction, whereas adult panelists showed a determination not to let their food allergies interfere with living their lives. Both groups had safety-conscious attitudes to treatments, but adult patients emphasized convenience while caregivers prioritized reduced severity of reactions and eliminated fear. Both groups confirmed the need for improved, trusted sources of information, and for resources and training programs for any new therapies. Conclusion: The interactive exchange provided insights into differences between adult patients and caregivers, notably in fear and confidence in daily life, severity of disease impact, and unmet needs for treatments.

KW - anaphylaxis

KW - disease life experience

KW - interactive dialogue

KW - mode of action (MOA)

KW - quality of life

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U2 - 10.3389/falgy.2023.1272851

DO - 10.3389/falgy.2023.1272851

M3 - Article

AN - SCOPUS:85177452982

SN - 2673-6101

VL - 4

JO - Frontiers in Allergy

JF - Frontiers in Allergy

M1 - 1272851

ER -

Living with food allergies: the experiences of adult patients and caregivers

Abstract

Keywords

UN SDGs

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