Food allergy treatment value: Child caregiver and patient perspectives

Abstract

Background Food allergy is a major health problem that significantly impacts quality of life (QoL). There is growing focus to evaluate food allergy‐related QoL and treatment options’ value beyond the clinical effectiveness perspective by engaging patients and caregivers. We aimed to identify and prioritize outcomes important to food allergy parents of children and patients allergic to milk, egg, and/or peanut, to guide comparative effectiveness research (CER) that focuses on evaluating food allergy treatment decisions. Methods We conducted a modified 3‐round Delphi study to identify and derive consensus on priority treatment outcomes for parents of children and adult patients with diagnosed allergies to at least one of three major allergenic foods (milk, egg, and peanut) from across the United States. Results Round 1 yielded 44 statements for round 2, and 39 statements reached the agreement level for round 3 ranking. Statements were organized under 4 sections: 1) food allergy problems, 2) treatment experiences, 3) important treatment outcomes, and 4) value of different treatment options. Conclusion Food allergy parents and patients face several social, psychological, medical, healthcare, financial, food selection, and awareness challenges. The areas of consensus on important treatment outcomes revealed shared priority for reducing the risk of potentially fatal allergic reactions and having reliable treatments. The most valued treatment options reflect hope for permanent cure and fear of serious allergic reactions.

Core Outcome Set for IgE‐mediated food allergy clinical trials and observational studies of interventions: International Delphi consensus study ‘COMFA’

“…A long list of outcomes was informed by comprehensive literature review of outcomes reported in published clinical trials, clinical trial protocols and published qualitative individual studies and a systematic review 10,11 …”

“…A long list of outcomes was informed by comprehensive literature review of outcomes reported in published clinical trials, clinical trial protocols and published qualitative individual studies and a systematic review. 10,11 The unique outcomes were categorized into domains via Dodd et al 12 taxonomy, initially reviewed by a core group through email and Zoom discussions. Subsequently, a hybrid 2.5-day meeting, involving researchers, health professionals, people with lived experience and carers, took place in Porto, Portugal, in October 2022 to present and deliberate the initial list of outcomes and descriptions.…”

Nutritional and Psychosocial Impact of Food Allergy in Pediatric Age

“…Recent evidence has also demonstrated this correlation in the context of food allergy [ 60 ] and the possibility of the association between food allergy, bodily dispersion, and eating disorders [ 61 ]. Food allergy has a social connotation as well [ 62 ]. A total of 53% of families with children with food allergy have abandoned the restaurant table on at least one occasion, 89% avoid specific restaurants, 57% have changed their vacation planning on at least one occasion, 69% decide to accompany their child on school-organized trips, and 25% have changed their child’s school [ 62 ].…”

“…Food allergy has a social connotation as well [ 62 ]. A total of 53% of families with children with food allergy have abandoned the restaurant table on at least one occasion, 89% avoid specific restaurants, 57% have changed their vacation planning on at least one occasion, 69% decide to accompany their child on school-organized trips, and 25% have changed their child’s school [ 62 ]. Food allergies thus impact the quality of life of affected individuals and their caregivers.…”

Oral Immunotherapy for Children with Cow’s Milk Allergy

“…A Canadian survey that performed a questionnaire study with parents of children with multiple food allergies, such as CMA and hen's egg allergy, reported that CM was the allergen food with the greatest time, financial, social, and emotional burdens compared to foods such as hen's eggs and peanuts [20]. Parents expected that medical treatments could permanently cure their children's food allergies and reduce their fear of severe allergic reactions if a cure was difficult [21]. The European Academy of Allergy and Clinical Immunology (EAACI) states that OIT may increase the amount of food that children can tolerate, alleviate allergic symptoms, and reduce the risk of potentially life-threatening allergic reactions [22].…”