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

Santos, Alexandra F., Worm, Margitta, Kurita, Shoko, Wong, Tania, Contato, Davide, Pirillo, Elia, Esteban, A. Esther, Tassinari, Paolo, Perna, Flavia, Chinthrajah, R. Sharon·2023·Frontiers in Allergy

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.

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Crossref · 10.3389/falgy.2023.1272851

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Figure 1 Treatment options for allergic reactions used by caregivers and adults. Multiple mentions were possible. “Other” included “allergy shots to lower overall IgE” (patient's words), adrenaline in emergency department, leukotriene, salbutamol or salmeterol + fluticasone.
Figure 1 Treatment options for allergic reactions used by caregivers and adults. Multiple mentions were possible. “Other” included “allergy shots to lower overall IgE” (patient's words), adrenaline in emergency department, leukotriene, salbutamol or salmeterol + fluticasone.CC BY · PubMed Central
Figure 2 Level of satisfaction with current management of food allergies.
Figure 2 Level of satisfaction with current management of food allergies.CC BY · PubMed Central
Figure 3 Burden of food allergy rated by caregivers and adult patients, respectively, on a scale from 1 (light) to 10 (heavy).
Figure 3 Burden of food allergy rated by caregivers and adult patients, respectively, on a scale from 1 (light) to 10 (heavy).CC BY · PubMed Central
Figure 4 Most important sources of information about food allergy used by caregivers and adult patients, respectively. More than one mention was possible.
Figure 4 Most important sources of information about food allergy used by caregivers and adult patients, respectively. More than one mention was possible.CC BY · PubMed Central

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Research works printed but not linked: 33

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Metadata

Authors
Santos, A. F., Worm, M., Kurita, S., Wong, T., Contato, D., Pirillo, E., Esteban, A. E., Tassinari, P., Perna, F., & Chinthrajah, R. S.
Venue
Frontiers in Allergy
Published
2023-11-06
Volume
4
ISSN
2673-6101
Cited by
13
References
0

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