Children with food allergy face ‘substantial’ psychosocial burden
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Key takeaways:
- Higher scores on the Food Allergy Independent Measure indicate greater burden.
- Models revealed few demographic differences in overall scores.
- Results may indicate opportunities for tailored interventions.
Children with food allergy face a substantial psychosocial burden regardless of their sociodemographic or clinical characteristics, according to a study published in The Journal of Allergy and Clinical Immunology: In Practice.
The cross-sectional, population-based survey polled 53,575 households in the U.S. with 38,408 children between October 2015 and September 2016, Melissa L. Engel, PhD, postdoctoral fellow, Center for Food Allergy and Asthma Research (CFAAR), Feinberg School of Medicine, and colleagues wrote.
“This study was prompted by growing attention on the psychosocial aspects of food allergy,” Engel told Healio. “While research has greatly proliferated in recent years, existing studies were often characterized by methodological shortcomings.”
Previously, researchers at CFAAR used robust methods to characterize the psychosocial burden of adult food allergy in a large, representative U.S. sample via the Food Allergy Independent Measure (FAIM).
“With the current study, we sought to extend these methods to youth with food allergies, with the goals of systematically evaluating the psychosocial burden of pediatric food allergy, understanding what sociodemographic and clinical characteristics may be associated with heightened burden, and establishing population-level norms for the FAIM,” Engel said.
Study results
The researchers classified food allergy as “reported” when caregivers said their child had a food allergy but did not endorse any stringent symptom. “Convincing” food allergies were noted when caregivers said their child’s most severe reaction included at least one item from a list of stringent symptoms.
When caregivers reported at least one stringent symptom and a diagnosis confirmed by a physician via oral food challenge, skin prick testing or specific IgE testing, the researchers classified the food allergy as “physician-confirmed convincing.”
Caregivers of children with food allergy (n = 4,734) completed the FAIM, which uses six questions scored on a seven-point Likert scale. Higher scores indicate greater psychosocial burden.
“The psychosocial burden of pediatric food allergy was generally substantial, irrespective of sociodemographic and clinical characteristics,” Engel said.
Mean composite caregiver-proxy FAIM scores included 2.79 for children with reported food allergy, 2.96 for children with convincing food allergy and 3.21 for children with physician-confirmed convincing food allergy.
“While there were a variety of factors associated with increased burden, there was not one factor that stood out as particularly salient,” Engel said. “This underscores the importance of considering a variety of factors when treating youth with food allergy and taking an individualized, patient-centered approach to care.”
There were few significant demographic differences in overall FAIM scores, the researchers noted, although overall psychosocial burden was significantly greater for children born in the U.S. compared with those born in other countries (beta = 0.53).
Engel said this difference was “somewhat surprising,” but aligned with the researchers’ previous findings among adults with food allergy.
“In the future, it would be interesting to examine potential mechanisms (eg, health communication, media representation, public education, availability of psychosocial supports) that may underlie this relationship,” Engel said.
Also, children aged 14 to 17 years experienced significantly lower overall psychosocial burden than those aged younger than 3 years (beta = –0.22).
Children from families with annual incomes greater than $150,000 had significantly less psychosocial burden than those from families with annual incomes of less than $25,000 (beta = –0.22).
Caregivers of children born in the U.S. also had significantly greater expectations of adverse food allergy outcomes than caregivers of children who were not born in the U.S. (beta = 0.56).
Similarly, expectations of adverse food allergy outcomes were significantly greater for caregivers of children in the middle three income brackets compared with those from the lowest income bracket (betas = 0.24, 0.24, 0.32).
The researchers said these differences may be due to Maslow’s hierarchy of needs, as families with the lowest incomes cannot worry about potential adverse outcomes before they have access to epinephrine autoinjectors and allergen-free food, in addition to meeting other basic physiological needs.
Caregivers of children aged younger than 3 years had significantly greater expectations of adverse food allergy outcomes compared with caregivers of children aged 3 to 5 years (beta = –0.23) and aged 14 to 17 years (beta = –0.3) as well.
Engel said that this finding also was surprising since it contrasts with existing literature, which generally suggests that burden increases as children age.
“Likewise, in my own work with patients with food allergy, adolescents often discuss heightened difficulties as food allergy management behaviors transition from caregiver to self-responsibility,” Engel said.
These findings may reflect how the burden of food allergy management shifts from caregivers to the children themselves as they get older, the researchers said, adding that the increased time that adolescents spend among their peers also may indicate that direct measures of their perspectives may provide more accuracy in these findings.
There also were significantly greater social impacts and dietary restrictions for children born vs. not born in the U.S. (beta = 0.58), and for those in the highest vs. lowest income bracket (beta = –0.54).
The researchers attributed these differences to the ability to afford specialty food brands, a broader range of restaurants, greater childcare choices and more therapeutic treatment options among families with higher incomes.
In addition to this greater control over their environment, the researchers continued, more affluent families also may have more flexible work arrangements and more time to dedicate to actively managing their child’s food allergy, minimizing disruptions.
Perceived social impacts and dietary restrictions were significantly reduced for children aged 14 to 17 years compared with those aged younger than 3 years (beta = –0.37), and for Black vs. white children (beta = –0.23).
Children with a history of environmental allergies (beta = 0.18) and/or eosinophilic esophagitis (beta = 0.79) had higher overall FAIM scores, with patterns that resembled those seen with expectations of adverse outcomes.
Also, children with a history of environmental allergies had greater social impact and dietary restriction scores (beta = 0.24). Children with a history of asthma (beta = 0.17) and eczema (beta = 0.24) had social impact scores that were marginally significantly greater as well.
Children with tree nut (beta = 0.47), wheat (beta = 0.41), peanut (beta = 0.28), fin fish (beta = 0.25), egg (beta = 0.17) and milk (beta = 0.16) allergies had higher overall FAIM scores.
Specifically, caregivers of children with tree nut (beta = 0.46), sesame (beta = 0.42), peanut (beta = 0.23) and egg (beta = 0.21) allergies had higher expectations of adverse outcomes, whereas children with wheat (beta = 1.23), tree nut (beta = 0.38), milk (beta = 0.34) and peanut (beta = 0.27) allergies had greater social impact and dietary restrictions.
Current prescriptions for epinephrine autoinjectors (beta = 0.45), an ED visit related to food allergy in the prior 12 months (beta = 0.4), a history of one or more severe allergic reactions (beta = 0.21), a lifetime ED visit related to food allergy (beta = 0.19) and a history of at least one food allergy diagnosed by a physician (beta = 0.14) all were associated with increased overall psychosocial burden related to food allergy.
The researchers noted that there was no significant association with an increase in overall burden with reported use of an epinephrine autoinjector. Also, they said, findings were similar for expectations of adverse outcomes (except for children with physician diagnoses of food allergy) and perceived social impacts and dietary restrictions.
Conclusions, next steps
Based on these findings, the researchers said that children with food allergy have a substantial psychosocial burden, with broad distribution across demographics.
Since the survey included respondents outside of clinical allergy populations, the researchers said these findings can provide normative values that providers can use to identify children and families that may benefit from psychosocial intervention.
The data also may be useful in estimating minimal clinically important differences in FAIM results that providers can use to measure the impact of their interventions, the researchers continued.
“Perhaps the greatest contribution of this paper is identifying United States population-level norms for the FAIM. This is an informative, validated and brief measure that doctors can now use clinically,” Engel said.
“By quickly screening patients at regular intervals, doctors can identify patients experiencing increased psychosocial burden and subsequently provide/connect families with prevention or intervention efforts to decrease food allergy-related psychosocial burden and enhance health-related quality of life,” she said.
Further, the researchers said, these findings can improve the understanding of public health and economic burden of pediatric food allergy in epidemiologic efforts.
Yet the researchers also said that additional research may better contextualize the relationships between psychosocial burden and income, education and other factors, which would inform the development and implementation of targeted interventions.
The differences in psychosocial burdens between children born in the U.S. and those not born in the U.S. indicate another area where research may inform tailored interventions for families as well, the researchers continued.
The greater overall psychosocial burdens among children with physician-diagnosed food allergy indicate that diagnosis alone is not enough to reduce these burdens, the researchers said, calling for greater psychoeducational efforts in allergy clinics and other settings that treat pediatric patients.
The associations between physician-diagnosed atopic comorbidities and greater psychosocial burden for children with food allergy merit further evaluation among patients with clinic evaluations as well, the researchers said.
Despite the changes in managing both food allergy and mental health since the data were collected, the researchers said, FAIM is still useful in measuring psychosocial burden due to its limited number of items, translation into multiple languages and correlations with other validated measurements of health-related quality of life.
“I really want to emphasize that all findings were caregiver report,” Engel said. “It is crucial that future research assess psychosocial burden via both caregiver report and adolescent self-report and see how these reports compare across development.”
Reference:
For more information:
Melissa L. Engel, PhD, can be reached at mengel@luriechildrens.org.