Food allergy-related deaths, although rare and for the most part preventable, occur. Headlines and stories shared by the media and social media report the circumstances of these tragedies, and a common theme is that the potential seriousness of a food allergy was not conveyed or understood.
Even before referral to a board certified allergist, pediatricians and other primary health care providers need to impart effective family and patient food allergy management education. Health care providers must identify patients with potentially life-threatening allergies and effectively provide patients and their families with food allergy management education. We need to convey that unless effective strategies are implemented at all times, there may be an increased risk for food allergy-related death — the elephant in the exam room.
Umasunthar and colleagues recently published a study that estimated the annual risk of death from a food allergy-related reaction in a child aged 19 years or younger to be 3.3 million person-years. By applying the upper range of recent food allergy statistics (6 million US children, based on 8% prevalence, we can extrapolate that close to 20 food allergy-related deaths occur in the United States in children per year. This is 20 too many.
Registries of fatal and near-fatal food-related anaphylaxis demonstrate a delay or lack in the administration of epinephrine in most cases (>85%). Most reactions in these registries lacked appropriate emergency response. Studies support that delays in epinephrine administration can increase mortality. What has been learned from these fatal registries reinforces the critical importance of food allergy management strategies, including allergen avoidance and emergency preparedness.
We need to impart the seriousness of food allergy management while not causing unnecessary anxiety. We ask our patients and their families to make modifications in their behavior that at times can be challenging. If they perceive the risk as low, they may not continue to adhere to recommended strategies. Alternatively, if the risk is perceived as high, this could unnecessarily decrease their quality of life. This can feel like walking a fine line.
Consider this: Some providers might not understand the risk and not realize that food allergies can be life threatening. Alternatively, some providers know the potential risk but are uncomfortable broaching the topic for fear of creating anxiety.
Little ears may be listening
Most pediatric and allergy visits occur within the earshot of the child. For very young children, uncensored conversations are not understood. For many patients, they hear and process what the health care team is discussing with their parents. Frightening words, like “deadly,” can set the child’s reality and frighten unnecessarily. In the case of older children who are taking more responsibility in food allergy management, they should be involved in tactfully delivered, age appropriate, honest conversations about their management.
Consider this: If the child is in earshot, then we must consider our word choices and be prepared to have follow-up conversations with the child and answer all of their questions. The presence of a child in the exam room could discourage a provider from having frank conversation about risk and food allergy-related death. If a provider attempts to have such a conversation when a child is present, but uses less obvious words and attempts to “speak around the elephant,” might their importance be misunderstood by the family? Might the presence of the child keep some families from asking questions about the risk of accidental exposure and death, or keep them from asking about treatment with an auto-injector?
Clinical teams have limited time with patients and their families. Visits can be less than 15 to 20 minutes. Besides patient education, time must be put toward history, physical exam, assessment, diagnostics, etc. Also, in many situations, other health care needs must be addressed. Despite these constraints, it is critical to have dialogue to support the importance of food allergy management and that fatal allergic reactions can occur, but with effective strategies, they become exceedingly rare.
Consider this: When the topic of food allergy-related death is raised, it may take additional time to empower and educate without causing anxiety or worry. Time constraints may also keep a provider from addressing this issue.
Focus on why we do what we do. When we do things to stay safe, we decrease the chance of food allergy-related death. Food allergy mortality risk is higher when appropriate strategies are not consistently applied and mortality is greatly reduced by implementation of best practice- and evidence-based strategies. Families can thrive without worry or anxiety.
Use your teams. A single person can’t do it all. Doctors, nurses and others on the health care team can divvy up responsibilities and increase total education time.
Consider a kids’ zone. If resources allow, have a space where parents can ask questions and have uncensored conversations without being heard by the child. If this is not possible, then consider having a team member accompany the child while having these discussions out of earshot.
Please note that kids should play a developmentally appropriate role in food allergy management, but at times parents may have potentially scary questions and high emotions. As children begin to self-manage, they should become active participants in tactfully led discussions concerning food allergy management and the importance of effective management skills.
If there seems to be discomfort, then arrange for follow-up. Set up additional time at a subsequent visit to address this issue directly. Consider having the parents without the child (in some circumstances, may be appropriate to bill for time).
Address additional concerns by phone. Consider a follow-up call to address additional concerns if the visit was limited by time or the presence of a fearful child.
Be well-educated on the issue. Physicians and nurses should be comfortable educating patients and families. With practice, food allergy management strategies can be efficiently delivered.
Share evidence-based resources. While face-to-face discussions are necessary, count on the fact that food allergy education will continue beyond the clinic walls. Consider sharing evidence-based and best-practice resources as well as trustworthy education and support groups.
Include training programs. Lastly, be sure to include food allergy management training in the training programs for health care professionals.
Educational materials and other resources can be found at AllergyHome.org.
Special thanks to Wayne Shreffler, MD, PhD; David Stukus, MD; Jennifer LeBovidge, PhD; Anne F. Russell, BSN, RN, AE-C; and Lynda Mitchell for their thoughtful reviews of this post.
Adapted from Food Allergy Mortality: The Elephant in the Exam Room, www.allergyhome.org/blogger/food-allergy-mortality-the-elephant-in-the-exam-room/.
Bock SA. J Allergy Clin Immunol. 2001;107:191-193.
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Michael Pistiner, MD, MMSc, is a pediatric allergist with Harvard Vanguard Medical Associates and voluntary instructor of pediatrics at Boston Children’s Hospital. He is co-founder and content creator of AllergyHome.org, co-author of Living Confidently with Food Allergy, and author of Everyday Cool with Food Allergies. Pistiner is co-chair of the Medical Advisory Team for Kids with Food Allergies Foundation and serves on the boards of Asthma & Allergy Foundation of America; Asthma & Allergy Foundation of America New England Chapter; and Food Allergy Management and Education (FAME). He is a fellow in the AAP, where he is a member of the Council of School Health and the Section of Allergy and Immunology. He is also a member of the American Academy of Allergy Asthma & Immunology, where he is a member of the Adverse Reaction to Food Committee and Chair of the Food Allergy Awareness in Eating Establishments Subcommittee. Pistiner can be reached at: Michael_Pistiner@atriushealth.org
Disclosure: Pistiner is the co-founder of AllergyHome.org. To date, AllergyHome has no financial relationship with any entity and offers all resources for free.