Parental and parent-perceived child interest in clinical trials for food allergen immunotherapy

Kao, Lauren M.; Greenhawt, Matthew; Warren, Christopher; Siracusa, Mary; Smith, Bridget; Gupta, Ruchi S.

doi:10.1016/j.anai.2017.12.012

Cited by 10 publications

(9 citation statements)

References 10 publications

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“…• may include developing a buffer against reactions due to accidental exposure, 155 translating to increased sense of freedom in daily life, 156 ability to freely eat the food allergen, 155 157 to consume a limited amount of the food allergen with caution, 155 or to reduce the risk of a fatal food reaction. 157 Page 34 of 45 Bégin et al Allergy Asthma Clin Immunol (2020) 16:20…”

Section: C11-acceptability and Capacity To Empower Users And Caregivementioning

confidence: 99%

CSACI guidelines for the ethical, evidence-based and patient-oriented clinical practice of oral immunotherapy in IgE-mediated food allergy

Bégin

Chan

Kim

et al. 2020

Allergy Asthma Clin Immunol

136

118

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Background: Oral immunotherapy (OIT) is an emerging approach to the treatment of patients with IgE-mediated food allergy and is in the process of transitioning to clinical practice.Objective: To develop patient-oriented clinical practice guidelines on oral immunotherapy based on evidence and ethical imperatives for the provision of safe and efficient food allergy management. Materials and methods:Recommendations were developed using a reflective patient-centered multicriteria approach including 22 criteria organized in five dimensions (clinical, populational, economic, organizational and sociopolitical). Data was obtained from: (1) a review of scientific and ethic literature; (2) consultations of allergists, other healthcare professionals (pediatricians, family physicians, nurses, registered dieticians, psychologists, peer supporters), patients and caregivers; and patient associations through structured consultative panels, interviews and on-line questionnaire; and (3) organizational and economic data from the milieu of care. All data was synthesized by criteria in a multicriteria deliberative guide that served as a platform for structured discussion and development of recommendations for each dimension, based on evidence, ethical imperatives and other considerations. Results:The deliberative grid included 162 articles from the literature and media reviews and data from consultations involving 85 individuals. Thirty-eight (38) recommendations were made for the practice of oral immunotherapy for the treatment of IgE mediated food allergy, based on evidence and a diversity of ethical imperatives. All recommendations were aimed at fostering a context conducive to achieving objectives identified by patients and caregivers with food allergy. Notably, specific recommendations were developed to promote a culture of shared responsibility between patients and healthcare system, equity in access, patient empowerment, shared decision making and personalization of OIT protocols to reflect patients' needs. It also provides recommendations to optimize organization of care to generate capacity to meet demand according to patient choice, e.g. OIT or avoidance. These recommendations were made acknowledging the necessity of ensuring sustainability of the clinical offer in light of various economic considerations. © The Author(s) 2020. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article' s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article'A multidisciplinary team comprised of experts from a diversity of fields was assembled, including allergists and other healthcare professional...

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Section: C11-acceptability and Capacity To Empower Users And Caregivementioning

confidence: 99%

CSACI guidelines for the ethical, evidence-based and patient-oriented clinical practice of oral immunotherapy in IgE-mediated food allergy

Bégin

Chan

Kim

et al. 2020

Allergy Asthma Clin Immunol

136

118

View full text Add to dashboard Cite

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“…Novel treatments have the potential to positively impact the lives of patients with food allergy and their caregivers by reducing the risk for allergic reaction in response to accidental allergen exposure and concomitantly reducing fear related to it [27,28]. However, the new food allergy treatments that have been developed to date will be long-term, non-curative treatments that require clinical monitoring beyond current allergy practice due to the daily possibility of allergic reactions, including anaphylaxis, and will still require patients to avoid allergens and carry epinephrine auto-injectors [25••, 29-31].…”

Section: Patients' Expectations For and Experiences With New Food Allmentioning

confidence: 99%

“…The highly individual nature of this decision is highlighted by the extant literature about parents' reasons for pursuing OIT and EPIT. Many caregivers who express interest in or enroll in clinical trials for immunotherapy self-report that they fear fatal anaphylaxis and want protection from accidental allergen exposure, but other caregivers choose this treatment because they want their children to be able to eat allergens freely [27,28]. The importance of informing families during the consent process about what they can expect during and at the end of treatment cannot be overstated, as incomplete information and/or unmet treatment expectations may have implications for adherence (which may lead to serious medical and/or psychological adverse events), treatment satisfaction, and the families' trust in the medical community.…”

Section: Patients' Expectations For and Experiences With New Food Allmentioning

confidence: 99%

Patients’ Perspectives and Needs on Novel Food Allergy Treatments in the United States

Herbert

Marchisotto

Vickery

2021

Curr Treat Options Allergy

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Purpose Food allergy management places a daily psychosocial burden on patients and their caregivers. New food allergy treatments may positively impact their lives, but also introduce new stressors. The purpose of this paper is to provide an overview of the current state of the literature regarding patients' and caregivers' food allergy experiences and needs within the United States as well as a set of recommendations regarding how best to proceed with patient-centered development and evaluation of new food allergy treatments. Recent findings The first pharmaceutical-grade product for peanut oral immunotherapy was approved in the United States for children aged 4-17 years following a successful international Phase 3 trial. This new treatment is only the first of several food allergy Food Allergy (M Fernández-Rivas, Section Editor)

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“…A 2016 survey of parents recruited from food allergy patient advocacy organizations reported that 56% of parents identified ad libitum allergen consumption as a treatment goal, with 28% identifying "protection from accidental ingestion" and 16% the "ability to consume limited amounts with caution." 68 However, a qualitative study that assessed parents of children enrolled in both phase 3 peanut trials noted that some parents are willing to trade reduced efficacy gains for lower therapy-associated risks. 10 In their own words, these parents viewed commercial forms of peanut immunotherapy as a "seat belt" that provides additional safety on top of vigilant supervision (which would not be relaxed) and risk reduction behavior.…”

Section: Unmet Needsmentioning

confidence: 99%

Unmet needs of children with peanut allergy

Chan

Dinakar

Gonzales-Reyes

et al. 2020

Annals of Allergy, Asthma & Immunology

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Background: Peanut allergy is a potentially severe and lifelong allergy, with few effective treatments or preventive measures. Objective: To convene an expert panel of allergists, pediatricians, and advocates to discuss and highlight unmet needs in the prevention and management of peanut allergies. Methods: Literature searches of PubMed were performed. The panel evaluated published data on the prevention of peanut allergy, treatment of existing peanut allergy, and management of reactions after unintentional peanut exposures. Results: The following key unmet needs in the prevention and management of peanut allergy were identified: (1) enhancing and optimizing implementation of early peanut introduction as a means of preventing

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Parental and parent-perceived child interest in clinical trials for food allergen immunotherapy

Cited by 10 publications

References 10 publications

CSACI guidelines for the ethical, evidence-based and patient-oriented clinical practice of oral immunotherapy in IgE-mediated food allergy

CSACI guidelines for the ethical, evidence-based and patient-oriented clinical practice of oral immunotherapy in IgE-mediated food allergy

Patients’ Perspectives and Needs on Novel Food Allergy Treatments in the United States

Unmet needs of children with peanut allergy

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