The Elephant in the Exam Room: Food Allergy Mortality
Written by Michael Pistiner, MD, MMSc
While written for a target audience of healthcare professionals, this post can give parents and others, talking points and things to consider when discussing food allergy management with healthcare teams.
Unfortunately, food allergy mortality, death related to food allergy, continues to occur. We’ve watched in agony as headlines report the circumstances of these tragedies and an all too common theme in many of these cases is that no one said that a food allergy could be that serious.
It is difficult to know how many children with food allergy have been saved each year due to effective food allergy management strategies. Evidence based allergen avoidance strategies, and the timely recognition and treatment of anaphylaxis with epinephrine must be reiterated to all who are responsible for the care of children with food allergy. Health care teams including doctors and nurses, must be trained to teach effective food allergy management strategies at the very onset of the allergy, even before seeing an allergist. We must emphasize the identification of patients with potentially life threatening allergies and the effective delivery of food allergy management education. Physicians and nurses must also be able to impart that unless effective management strategies are put in place, there may be an increased risk of food allergy mortality, the elephant in the examining room.
Walking the Fine Line: Discussing Food Allergy Mortality
The healthcare team must effectively convey the importance of food allergy management while maintaining a delicate balance and not causing unnecessary worry or fear. We ask our patients and their families to do things that sometimes are socially and practically challenging. We ask them to make major behavioral modifications because of the potential of an allergic reaction. If perceived risk is low, will they adhere to socially and practically challenging interventions? Alternatively, if perceived risk of food allergy mortality is high and unmanageable will they suffer from decreased quality of life, social restriction and anxiety? It’s a fine line and to complicate matters variations in coping may differ from family to family, and within families, from parent to parent and their children.
Food for thought: Might some physicians and nurses not understand risk and not realize that food allergies can be life threatening? Alternatively, might some providers know the potential risk but are uncomfortable broaching the topic for fear of creating anxiety?
Fitting the Elephant in the Pediatric Exam Room: Discussing Food Allergy Mortality
Typically, pediatric and allergy visits occur in the traditional examining room where parents and the child are present. In some cases the kids are young enough that uncensored conversations are not understood and in other cases are at an age that they should be involved in open (but tactfully delivered) conversations about their own management. But for many of our patients, they are still young but can hear and process what the healthcare team is discussing with their parents. If scary words (e.g. ‘deadly’, ‘life-threatening’, etc.) are used while in earshot, then this can set the child’s reality and be frightening.
Food for thought: If the child is present for these conversations, then we must consider what words are being used and must be prepared to have a follow up conversation with the child and answer any questions that they may have. Might the presence of children in the examination room discourage some providers from feeling comfortable having frank conversations about risk and food allergy mortality? If a provider attempts to have such a conversation but use less obvious words and speak in “code” might their message be missed or misinterpreted by the parents? Might the presence of children in the examination room discourage some parents from asking questions about risk and treatment with epinephrine?
Addressing Food Allergy Mortality and Opening Pandora’s Box?
The time that clinical team members have with our patients is limited. This is a challenge and frustrating for many in healthcare. Visits, that in the perfect world could last an hour, are squeezed into 15 or 20 minutes, sometimes even less. Time during the visit will also need to be devoted to assessment and evaluation, not just family/patient education. Additionally, in many cases food allergy isn’t the only concern that needs to be addressed. Asthma, eczema, allergic rhinitis and others must also be managed and addressed. In general pediatrics there are even more issues that take time and focus. It is important to have a real conversation about the importance of food allergy management, addressing the fact that fatal allergic reactions do occur but that with effective food allergy management strategies are exceedingly rare. Understandably, some parents and patients may be caught off guard, some may have additional questions, others may not seem to register what was just delivered. Once the topic of food allergy mortality is broached, it may take more time to appropriately and positively educate and empower.
Food for thought: Might time constraints influence the initiation of these important discussions?
Traffic and Food Allergy Mortality Statistics: A Parallel for Perspective
Food Allergy Mortality: Boyle and colleagues recently published a study in Clinical and Experimental Allergy, Incidence of fatal food anaphylaxis in people with food allergy: a systematic review and meta-analysis,that estimated the yearly risk of a child age 19 or lower dying from a food allergic reaction to be 3.25 per million person-years. If this rate is applied to the upper range of recent food allergy statistics (6 million US children, based on 8% Prevalence as per Dr. Ruchi Gupta and colleague’s study [Gupta et. al. Pediatrics 2011]) we can roughly extrapolate that close to 20 food allergy related deaths (twenty too many) per year occur in the United States in children (6 x 3.3). When looking at registries of fatal and near fatal food allergic reactions, there was a delay or lack in the administration of epinephrine in the vast majority of cases (over 85%), meaning that most of these reactions lacked the appropriate emergency response. Research supports that delays in treatment with epinephrine increase the chance of death. These registries also reinforce the utter importance of food allergy management strategies including allergen avoidance and emergency preparedness. (Bock SA, Muñoz-Furlong A, Sampson HA. J Allergy Clin Immunol 2001; 107:191.), (Bock SA, Muñoz-Furlong A, Sampson HA. 2001-2006. J Allergy Clin Immunol 2007; 119:1016). Take Home Point: Allergen avoidance strategies and prompt treatment of anaphylaxis with epinephrine can save lives. See Food Allergies: A Lot is Riding on Our Tires for in depth, parent directed discussion about food allergy mortality. |
Potential Solutions to Challenges in Addressing the Elephant in the Exam Room (Food Allergy Mortality)
Focus on WHY we do what we do. When we do things to stay safe, like avoiding accidental exposure and being ready to deal with an allergic emergency ,then we make the chances of something bad happening very, very small. Risk of food allergy mortality is higher when management strategies are not consistently implemented. Risk can be mitigated by implementing evidence based practical management strategies. People can live well with a food allergy without worry or anxiety.
Use a team approach. One person cannot do it all. Physicians, nurses, and other members of the healthcare team can divide responsibilities and increase the total time that families have for education during their visit.
Have a safe, comfortable area for kids. If space allows have a physical space where parents can ask questions and have discussions, uncensored and just out of earshot if necessary. If resources or space do not allow for this then consider having a member of the team accompany the child while open and uncensored discussions can occur away from the child. Please note that children should play a developmentally appropriate role in food allergy management but at times parents may have strong emotions and unanswered and potentially scary questions. As the children get older and begin to self manage they should become active participants in discussions concerning food allergy management and the importance of effective management skills.
If there seems to be discomfort or a lack of understanding have the family back for follow up. Carve out additional time to address this issue directly (look into possibility of having parents only and billing by time).
Discuss additional concerns over the phone. Consider having a follow up phone call to further address issues not thoroughly covered if the visit was time- limited.
Get comfortable with food allergy management strategies. Physicians and nurses in pediatrics and allergy should strive to know food allergy management strategies cold. With time and repetition, food allergy management strategies can be efficiently delivered.
Share evidence based resources; encourage use of trusted internet resources and trusted local support groups. While face to face discussions are necessary, count on the fact that learning about food allergy management will continue beyond the walls of the exam room.
Work to include food allergy management training in health care professionals training programs.
RESOURCES FOR FOOD ALLERGY MANAGEMENT TRAINING:
1) Living Confidently With Food Allergy Handbook: A free, easy to use, handbook designed to give parents the tools to keep their children with food allergies safe and happy while addressing their emotional needs. This fact based guide was reviewed by internationally recognized food allergy experts. This American and Canadian collaboration was lead by Anaphylaxis Canada and is available online and in PDF.
2) Food Allergy Management Quick Guide: This one page handout is a summary of essential skills needed to manage food allergies. This resource is a creation of AllergyHome in collaboration with Kids with Food Allergies.
(Please note that this is for educational purposes only. The information provided is not intended to be a replacement or substitute for professional medical advice. Any information that you have received from AllergyHome.org should be verified with a licensed health care provider).
Acknowledgments: 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.
I agree. Ten years ago when my daughter was diagnosed I was informed of how serious it was and to always have her epi pen but didn’t have enough resources or information. I hadn’t been talked to about cross contamination or importance of label reading. Thankfully our few errors in judgement did not cost us the ultimate price…her life..because we acted quickly and correctly with the epi pen. Needless to say, we are now very informed and conscientious about all of it.
Fortunately, I’m very aware of food allergies and their profound consequences. I used to work as a secretary in a school that had at least two students with life-threatening allergies who always carried epipens on them. Every office staff member was taught how to administer an epipen and where students’ spare epipens were stored. ALL substitute teachers and staff were taught how to administer an epipen in case of emergency. And the school had a very strict policy about what foods could be served for celebrations, particularly in the affected students’ classes. And the affect students had parents who really advocated for their kids’ safety.