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FARE Blog March 28, 2023

AAAAI 2023 Highlights: FARE Patient Registry

The FARE Patient Registry was the focus of four posters presented at the annual meeting of the American Academy of Allergy, Asthma & Immunology in San Antonio, TX, held Feb. 24-27, 2023.

In the studies summarized below, three research teams analyzed data reported by food allergy patients and caregivers to the FARE Patient Registry, while a fourth team investigated opportunities to increase demographic diversity among Registry participants and represent the food-allergic population more accurately. To learn more about FARE Patient Registry research and how food allergy patients can join the Registry, visit foodallergy.org/registry.

Mental Health Concerns of Patients and Their Caregivers in the FARE (Food Allergy Research & Education) Patient Registry Add to the Burden of Food Allergy

Sachin Gupta
Sachin Gupta, MD, Genentech

Researchers from Genentech and Northwestern University used FARE Patient Registry data collected between May 2017 and January 2021 to characterize the clinical and mental health burdens reported by food allergy patients and caregivers and to compare the burdens of managing a single food allergy versus multiple allergies to two or more foods.

More than half of Registry patients (54.2 percent) were under 18 years of age, and most were female (56.2 percent). Out of every 11 patients, 10 had experienced more than one reaction to food (90.8 percent), and nearly one-quarter (23.7 percent) had experienced a severe or very severe recent reaction. Half of the reported reactions (50.6 percent) occurred away from home. 

Of the 1,681 patients or caregivers who completed the Registry’s mental health survey, 84 percent were living with multiple food allergies, compared to 16 percent living with a single food allergy. The food allergens reported most frequently were peanuts (64 percent), tree nuts (62 percent), egg (41 percent), and milk (37 percent). About one-third (31 percent) of patients and caregivers had experienced a recent severe or very severe reaction

Christopher Warren
Christopher Warren, PhD, Northwestern University

Nearly two-thirds of patients (62 percent) reported mental health concerns related to food allergy, and more than one-third (38 percent) reported mental health concerns that extended beyond food allergy. More than half of patients (54 percent) reported anxiety as a symptom of eating their problem food. Additional anxieties reported by patients involve oral food challenges, food allergy reactions, and living with the disease. Patients reported mental health concerns about bullying and social isolation as well as food avoidance. Mental health concerns reported by caregivers included stress and fear of trusting others to care for the child, fear for the child’s safety and fear regarding dietary restrictions.

The mental health concerns reported by patients and caregivers impacted those living with multiple food allergies at higher rates than those living with single food allergies. Diagnosis of a comorbid mental health disorder was reported more frequently by patients with multiple food allergies (32 percent) than by those with a single food allergy (24 percent), but the impact of food allergy on these comorbid diagnoses is not known.

Despite the prevalence of patient-reported mental health concerns and anxieties, mental health was not typically incorporated into specialized allergy care. Only 8.7 percent of patients reported that screens for mental health disorders were included in their appointments with their allergists.

The prominence of mental health concerns, especially with multiple food allergies, adds to food allergy burden and shows that psychological assessments are needed for patients and families.

Delay in peanut allergy diagnosis in the United States

Sydney Warner
Sydney Warner, Emory University

Researchers at Emory University, a Center of Distinction in the FARE Clinical Network, used data from the FARE Patient Registry to study the length of time between first reaction to peanut and diagnosis of peanut allergy in children and young adults, evaluating factors that may affect this time period. Potential delays in diagnosis can lead to continued accidental exposures and reactions among food-allergic individuals, or unwarranted changes in lifestyle, such as medically unnecessary food restrictions, among individuals for whom diagnosis rules out a food allergy. 

The research team analyzed Registry data from 3,884 peanut-allergic individuals under 21 years of age. Nearly 70 percent were diagnosed within six months from initial symptoms. Delayed diagnosis, defined as a period of six months or longer between first reaction and diagnosis, was more likely in patients who were female, who had a family history of food allergy, or who received care from allergists and sub-specialists.

About a quarter of participants for whom diagnosis was delayed were nonwhite. However, racial diversity among FARE Patient Registry participants was not sufficient to support effective analysis of race as a factor in delay of diagnosis. The Registry is engaged in ongoing efforts to enroll a more racially and ethnically representative population of food-allergic individuals and thereby increase the Registry’s impact as a research tool.

Garlic Allergy

Wala Hamadi
Walaa Hamadi, MD, University of South Florida

Investigators at the University of South Florida identified garlic-allergic patients in the FARE Patient Registry and characterized clinical aspects of this rarely diagnosed food allergy. From May 2017 to October 2021, 132 individuals reported a garlic allergy to the FARE Patient Registry. This is the largest cohort of garlic-allergic patients reported to date. Two-thirds of the garlic-allergic patients were diagnosed by an allergist, and 74 percent reported a positive skin prick test. More than a quarter of these patients (34 patients, or 25.8 percent) also reported an allergy to another allium species such as onion, leek, shallot, scallion, or chive.

Patients with garlic allergy were diagnosed later in life than those with other single food allergies. Among patients with a single allergy to a food other than garlic, three-quarters were diagnosed before the age of 10, but only 36 percent of garlic-allergic patients were diagnosed in the first decade of life. Garlic-allergic patients were also more likely than patients with other single-food allergies to have a family history of food allergies and to report comorbid allergic conditions such as hay fever, asthma, or eczema. More than half of patients with a garlic allergy (56 percent) presented to the emergency room for a garlic-induced allergic reaction, nearly one-fifth (19 percent) were hospitalized, and 6 percent were admitted to the intensive care unit. These findings suggest there is a need to evaluate sensitization to garlic and other allium species in people with reactions to unknown foods, given garlic’s widespread use and potential to trigger serious allergic reactions.

Influential factors that affect food allergy families' engagement with research

Christopher Young
Christopher Young, Children’s Healthcare of Atlanta

Researchers at Children’s Healthcare of Atlanta Hospital and Emory University surveyed patients (mean age, 6.6 years) and their families during clinic visits to investigate factors that influence the decision to enroll in the FARE Patient Registry.

Investigators found that most food allergy patients and families were willing to join the FARE Patient Registry when personally invited to do so during clinic visits. Among 56 survey participants, about one-quarter (23.2 percent) declined to join the Registry. Top reasons given for declining to join the Registry included time restraint and the need to discuss the decision with other family members. Demographic and clinical factors were associated with the decision to enroll in the Registry:

  • Families who declined participation had younger children on average. The mean age of patients who joined the Registry was 7.45 years compared to 3.83 years for those who declined.
  • Two-thirds of Asian patients declined to join the Registry, compared to only 16.7 percent of Black patients. Of the patients who declined to join the Registry, 54 percent were White, 31 percent were Black, and 15 percent were Asian.
  • Patients living with wheat allergy were more likely to decline Registry enrollment than patients with other specific food allergies.
  • Families managing greater food allergy burden were more likely to join the Registry. Among patients with only one food allergy, 61.5 percent joined the Registry, whereas among those with 3 or more food allergies 84.6 percent of patients joined. Of the patients who had previously been treated with epinephrine or taken to the emergency room, 81.8 percent joined.

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