Food allergy anxiety assessment: New tools can promote enhanced clinical care and patient-centered treatment evaluation

Abstract

Sitting down to a meal with loved ones is a quintessential human experience—one that offers the opportunity to connect and recharge. Yet, for patients with food allergies and their families, seemingly simple activities such as meals can require extensive planning, risk assessment, and preparation for emergencies. Indeed, during the past 2 decades, a robust body of research using qualitative research methods and validated quantitative measures of food allergy-related quality of life has documented how a food allergy diagnosis can diminish aspects of quality of life for patients and their families.1Johnson SF Woodgate RL. Qualitative research in teen experiences living with food-induced anaphylaxis: A meta-aggregation.J Adv Nurs. 2017; 73: 2534-2546Crossref PubMed Scopus (14) Google Scholar, 2Moen ØL Opheim E Trollvik A. Parents experiences raising a child with food allergy: a qualitative review.J Pediatr Nurs. 2019; 46: e52-e63Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar, 3Warren CM Otto AK Walkner MM Gupta RS. Quality of life among food allergic patients and their caregivers.Curr Allergy Asthma Rep. 2016; 16: 38Crossref PubMed Scopus (68) Google Scholar Qualitative research has documented that patients with food allergy and their parents frequently experience anxiety about accidental allergen exposure and anaphylaxis.2Moen ØL Opheim E Trollvik A. Parents experiences raising a child with food allergy: a qualitative review.J Pediatr Nurs. 2019; 46: e52-e63Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar Using a cognitive-behavioral framework, food allergy anxiety can be delineated into a few domains: (1) worries regarding allergen avoidance and effective management of emergencies; and (2) engagement in safety and avoidance behaviors, such as frequent checking for symptoms of an allergic reaction or avoidance of specific places in which allergens may be present. Patients with food allergies who experience anxiety may also experience physiological symptoms (eg, stomach pain, changes in breathing) that seem similar to symptoms of allergic reactions, which can result in uncertainty on the cause of symptoms and whether or not treatment is needed. Much like general anxiety, food allergy-specific anxiety exists on a spectrum. A small to moderate level of anxiety may be adaptive because it promotes adherence to food allergy management behaviors, thereby reducing the risk of allergen exposure and promoting effective emergency management responses. However, a high level of anxiety may be maladaptive because it can impair the patient or parent's ability to manage food allergy appropriately and lead to an overrestriction of the patient's diet and overly limited participation in activities (eg, school, social situations, work). A recent article by Soller et al4Soller L To S Hsu E Chan ES. Current tools measuring anxiety in parents of food-allergic children are inadequate.Pediatr Allergy Immunol. 2020; 31: 678-685Crossref PubMed Scopus (8) Google Scholar evaluated the sensitivity of a measure of general anxiety, the State-Trait Anxiety Inventory, to identify parents with food allergy-related anxiety (measured by a visual analog scale) and found that greater than 30% of parents with high food allergy–related anxiety would not have been identified as anxious if only the State-Trait Anxiety Inventory was used. Thus, clinicians and researchers who use general measures of anxiety with food allergy populations are likely missing opportunities to understand and assist families who experience anxiety specific to food allergy management. Evidence-based theory-grounded interventions are also scarce and challenging to evaluate because there are few measures available to assess changes in targeted outcomes, such as food allergy anxiety and food allergy management behavior. There is precedent for illness-specific measures in other illness groups (eg, the Hypoglycemia Fear Scale for patients with type 1 diabetes and parents, or the Pediatric Quality of Life Inventory illness-specific modules, which assess illness-specific aspects of quality of life). In recent years, the food allergy community has developed similar specific assessment tools: (1) the Scale of Food Allergy Anxiety,5Dahlsgaard KK Wilkey LK Stites SD Lewis MO Spergel JM. Development of the child- and parent-rated scales of Food Allergy Anxiety (SOFAA).J Allergy Clin Immunol Pract. 2022; 10 (161-169.e6)Abstract Full Text Full Text PDF PubMed Scopus (5) Google Scholar which assesses child food allergy anxiety in self-report and parent-proxy forms; (2) the Food Allergy Anxiety Scale,6Coelho G Byrne A Hourihane J DunnGalvin A. Development of the Food Allergy Anxiety Scale in an adult population: psychometric parameters and convergent validity.J Allergy Clin Immunol Pract. 2021; 9 (3452-3458.e1)Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar which assesses food allergy anxiety among adult patients; and (3) the Worry About Food Allergy questionnaire,7Poehacker S McLaughlin A Humiston T Peterson C. Assessing parental anxiety in pediatric food allergy: development of the Worry About Food Allergy Questionnaire.J Clin Psychol Med Settings. 2021; 28: 447-456Crossref PubMed Scopus (3) Google Scholar which assesses parents’ food allergy-specific worries. The study, “Development of a Validated Tool to Screen for Food Allergy-associated Parental Anxiety,”8To S Westwell-Roper C Soller L Evelyn Stewart S Chan ES Development of a validated tool to screen for food allergy-associated parental anxiety (IMPAACT).Ann Allergy Asthma Immunol. 2022; 129: 451-460Abstract Full Text Full Text PDF Scopus (3) Google Scholar in this issue of Annals of Allergy, Asthma, and Immunology, details the development and validation of the Impairment Measure for Parental food Allergy–associated Anxiety and Coping Tool (IMPAACT), an assessment tool that measures parents’ own anxiety on their child's food allergy. The IMPAACT is a 28-item scale that uses a 7-point Likert scale (“not at all” to “extremely”) to generate 4 subscales: (1) food allergy-associated worries, (2) behavioral avoidance and reassurance, (3) anxiety impact, and (4) child coping. These subscales appropriately span the cognitive, behavioral, and physiological manifestations of the parents’ anxiety and the impact of food allergy on the child. The authors found appropriate test-retest reliability, convergent validity with measures of general anxiety and food allergy-related quality of life, and concurrent validity with a question pertaining to the parent's interest in meeting with a psychologist. Although additional work is needed to evaluate the IMPAACT among a racially, ethnically, and socioeconomically diverse patient population, this measure is an important first step toward a greater understanding of parents’ food allergy-specific anxiety. The development of these assessment tools brings a mandate to clinical researchers to evaluate their utility and effectiveness. A 2016 study that evaluated mental health screening among parents of children with food allergy found that screening did not lead to a greater number of parents scheduling a mental health care appointment.9Shemesh E Lewis BJ Rubes M Ambrose MA Cahill MK Knight C et al.Mental health screening outcomes in a pediatric specialty care setting.J Pediatr. 2016; 168 (193-197.e3)Abstract Full Text Full Text PDF PubMed Scopus (11) Google Scholar Now that these new measures are available, further research is needed to understand how their inclusion in clinical care may affect patients and to guide clinicians on their use. We hypothesize that these measures can be used in a clinical setting to guide care; clinicians can have patients and parents complete these measures during medical appointments, review the results with families, and identify aspects of food allergy management that elicit anxiety. With this information, clinicians can validate and discuss these concerns, problem-solve ways to cope with them, and, if needed, provide recommendations for follow-up with a mental health professional. We further hypothesize that these measures may improve our ability to evaluate evidence-based interventions aimed at promoting food allergy-related adjustment. Researchers could consider administering these measures at baseline and post-treatment to evaluate the impact of the intervention on anxiety outcomes. Furthermore, food allergy anxiety has long been presumed to be an important predictor of food allergy management behavior, such as carrying epinephrine; with these new measures, the food allergy community may be able to systematically evaluate this relationship. These tools may be important to consider for inclusion in food allergy diagnostic and treatment research as well. For example, many families who pursue oral or epicutaneous immunotherapy as a treatment for food allergy are motivated to reduce the risk of fatal food allergic reactions.10Dunlop JH Keet CA. Goals and motivations of families pursuing oral immunotherapy for food allergy.J Allergy Clin Immunol Pract. 2019; 7 (662-663.e18)Abstract Full Text Full Text PDF PubMed Scopus (14) Google Scholar Thus far, the inclusion of psychosocial outcomes in related clinical trials has been limited to food allergy–related quality of life, which, although an important domain to assess, is not the same as food allergy anxiety. Inclusion of food allergy anxiety measures in clinical trial assessment batteries could lead to a greater understanding of patients’ and families’ motivations for and experiences during food allergy treatment and the impact of reaching important immunotherapy targets. Additional research is needed to assess the clinical use of food allergy-specific anxiety measures. However, their availability ushers in a new era in which clinicians and researchers may be able to systematically assess the experiences of patients with food allergy and their families in a way that has only been captured through qualitative research thus far.