The mental health burden of food allergies: Insights from patients and their caregivers from the Food Allergy Research & Education (FARE) Patient Registry

Abstract

Background: Food allergies impose a large psychosocial burden, including mental, emotional, and social aspects, on both patients and their caregivers. Patients, caregivers, and their families often experience anxiety, isolation, and fear around food allergies.

Objective: To assess the real-world mental health burden of food allergies, using the Food Allergy Research & Education (FARE) Patient Registry (NCT04653324).

Methods: Self-reported data from patients with food allergies, and their caregivers, were analyzed from the FARE Food Allergy History and Mental Health Concerns surveys. Odds ratios were also calculated as a measure of association between patient food allergy characteristics and the likelihood of having mental health concerns or a formal mental health diagnosis.

Results: The FARE Patient Registry included 1680 patients/caregivers. Anxiety (54%) and panic (32%) were the most common emotions that patients reported as a result of eating the food that produced an allergic reaction. About two-thirds of patients reported mental health concerns related to food allergies (62%), including anxiety after an allergic reaction, anxiety about living with food allergies, and concerns about food avoidance. Caregivers also experienced fear for the safety of their children, and often sought mental health care to cope with worry related to caring for patients with food allergies. The likelihood of having food allergy-related mental health concerns was increased for patients experiencing more than 1 reaction per year (OR 1.68-1.90) and was lowered for patients having a formal mental health diagnosis (OR 0.43). Caregivers filling out the FARE survey for pediatric patients (OR 4.03) and experiencing food allergy-related mental health concerns (OR 2.36) were both significant predictors for having a formal mental health diagnosis.

Conclusion: Our study highlights a continuing unmet need for mental health screening and support as part of the management of patients with food allergies.

Keywords: Anaphylaxis; Anxiety; Caregivers; Food allergy; Food hypersensitivity; Mental health.

Fig. 1

Common emotions experienced by patients with food allergies (n = 1680). Response to the survey question, “Choose the EMOTIONAL/BEHAVIORAL symptoms that the participant developed as a result of eating the food or foods that produce an allergic reaction. (Select all that apply)”

Fig. 2

Food allergy-related mental health concerns of patients with food allergies and their caregivers (n = 1680 participants, including n = 980 caregivers). A. Patient response to the survey question, “What types of mental health concerns related to food allergy has the participant experienced? (Select all that apply).” B. Caregiver response to the survey question, “What types of mental health concerns related to food allergy has the participant experienced? (Select all caregiver only responses that apply)”

Fig. 3

Odds ratio (95% CI) of patient demographic and food allergy characteristics and their association with food allergy-related mental health concerns (n = 1680). An OR >1 indicates that the characteristic is associated with an increased likelihood of mental health concerns. An OR <1 indicates that the characteristic is associated with a decreased likelihood of mental health concerns. All OR are defined as the likelihood of having mental health concerns compared to a reference group: higher or unsure of frequency of allergic reactions (compared with less than one reaction per year); single food allergy (compared with multiple food allergies); not admitted to hospital (compared with admission to hospital for an allergic reaction); unsure of admission to the intensive care unit (ICU; compared with admission to ICU for an allergic reaction); survey completed by parent (compared with survey completed by self); unknown reaction severity/did not answer question (compared with moderate reaction severity); non-White race (compared with White race); formal mental health diagnosis (compared with no mental health diagnosis); and female (compared with male). Significantly associated characteristics are indicated as ∗p < 0.05, ∗∗p < 0.01, and ∗∗∗p < 0.001

Fig. 4

Mental health screening of patients with food allergies (n = 1680). Response to the following survey questions: “Has the participant ever been screened or assessed for food allergy-related stress or mental health concerns during an allergy appointment?”; “Would the participant like for an allergist or pediatrician to screen for mental health concerns related to food allergy?”; “How was the participant screened or assessed?”; and “Who conducted the screening or assessment?”

Fig. 5

Odds ratio (OR [95% CI]) of patient demographic and food allergy characteristics and their association with a formal mental health diagnosis (n = 1680). An OR >1 indicates that the characteristic is associated with an increased likelihood of a formal mental health diagnosis. An OR <1 indicates that the characteristic is associated with a decreased likelihood of a formal mental health diagnosis. All OR are defined as the likelihood of having a formal mental health diagnosis compared to a reference group: survey completed by parent (compared with survey completed by self); experienced food allergy-related mental health concerns (compared with no mental health concerns); single food allergy (compared with multiple food allergies); and severe reaction (compared with moderate reaction severity). Significantly associated characteristics are indicated as ∗p < 0.05 and ∗∗∗p < 0.001