Speaker: Every patient encounter is an opportunity to address food allergy misconceptions

LOUISVILLE, Ky. — Misconceptions and misinformation abound surrounding food allergy, but clinicians can use the trust they have built with their patients to anticipate their concerns and address their questions, according to a speaker.

Patients can be easily influenced by such misconceptions and misinformation because of the strong culture of fear that surrounds food allergy, David Stukus, MD, FACAAI, professor of clinical pediatrics and director of the Food Allergy Treatment Center in the division of allergy and immunology at Nationwide Children’s Hospital, said during his presentation at the American College of Allergy, Asthma & Immunology Annual Scientific Meeting.

“A diagnosis of a food allergy is a diagnosis that is filled with uncertainty and nuance,” he said. “That can be really challenging for a lot of people to accept.”

Misinformation vs. misconceptions

As an example of confronting misinformation, Stukus shared an interaction he had with a parent regarding their child’s supposed corn allergy. Stukus said he spent 45 minutes trying to convince the parent that their child was not actually allergic to corn, only then to be asked about “retraining” the child’s amygdala to treat their food allergies and addressing the child’s “leaky gut.”

In such cases, Stukus said he uses three key phrases: “That lacks biological plausibility,” “There is no evidence to support this claim,” and “Someone with a real food allergy could be harmed if they eat their food allergen after trying this.”

“Misinformation is false information that’s spread regardless of whether there is an intent to mislead,” Stukus said, adding that a report on health misinformation published in 2021 by the U.S. Surgeon General has helpful information on how to positively impact patients who have been bombarded with such false information.

On the other hand, misconceptions — which differ from and are more complicated than misinformation — can arise from outside influences, cognitive biases and outdated clinical practice, Stukus said.

“A lot of misinformation is born from misconceptions, but misconceptions are a little more complicated,” Stukus said. “These are views or opinions that are incorrect because they are based on faulty thinking or understanding.”

Clinicians are at an advantage to tackle these misconceptions during “nuanced conversations,” Stukus added.

“Our patients who have come to see us trust us,” he said. “We often have long-term relationships with them. We build trust, and we need to take advantage of that when we have them in front of us; we need to anticipate their concerns and address their questions.”

Monitoring body language, diving deep into the nuances of each topic, and listening are all key when it comes to addressing misconceptions with patients, Stukus said, acknowledging that even though time might be limited during appointments, it is important to show empathy and be nonjudgmental.

“I never fault a person who comes to me with their home analysis that shows they have 300 food sensitivities; they are victims here,” he said. “They’re doing the best they can with the information available at the time, but I can listen to their concerns, address them and hopefully talk them off the ledge.”

‘We lost control of the narrative’

The fact that there is no single cause or cure of food allergy can make patients prone to search for answers online, especially during the wait between making an appointment with an allergist and actually being seen, according to Stukus.

“They’re going to go online and look for information, and the information that they receive is going to influence their medical decision-making,” he said. “They already come to us with preconceived notions as to what they think they have and the best treatment, but they are going to be subjected to a lot of incorrect information.”

Patients often do not consider confounding factors when reading anecdotal reports online, or they may confuse correlation and causation, he added.

Moreover, there is often a lack of context on social media posts related to allergies, which can cause undue fear and unbalanced media coverage.

When families come to an appointment specifically acknowledging they are concerned about food allergy fatalities, Stukus said he recommends asking them how many children they think die of food allergy each year.

“I’ve received answers of anywhere from 1,000 a year to 50,000 a year,” he said. “Then, we have a conversation. I say, ‘To the best of our ability, we think it’s probably less than 50 children a year who are actually dying of this.’ Their perception doesn’t always match the reality and we can address that.”

Stukus also said that patients who previously had been managing their child’s allergy may suddenly become very anxious after reading frightening media coverage.

“So I have a conversation with them and I say, ‘Just because you read that doesn’t change your child’s inherent risk. It changes your perception of it.’”

There also has been a growing emphasis on “peanut-free zones” over the last 2 decades, Stukus said, to the point where social media attacks abound when patients or parents perceive others’ actions to be dangerous, posting comments such as “sending in a peanut butter sandwich with your kid is like sending in a weapon for my kid.”

“There are ‘nut-free zones,’ signs on playgrounds, nut-free games at major league baseball stadiums and nut-free schools, but all the new recent food allergy guidelines published from our society and others from the American Academy of Pediatrics talk about how this is not medically necessary,” he said. “We lost control of the narrative somewhere along the way.”

The medicalization of infant feeding also creates excessive fear surrounding food allergies, Stukus said.

“Ninety-eight percent of all parents will never see their child experience a peanut allergy reaction, but if 100% of them are told, ‘Be very careful that first time you give it, rub a little on their skin or lip first,’ that’s a very powerful message they’re hearing,” Stukus said. “A lot of people assume that a diagnosis of food allergy means they’re going to have anaphylaxis if they eat their food, regardless of the form or amount. And they also incorrectly assume that if you have anaphylaxis, you’re going to die.

“It’s not that far of a stretch to connect these dots, but we can interrupt that thought process,” he added.

‘Evolve with the evidence’

By putting too much emphasis on imprecise tests results, such as IgE testing, clinicians may be playing a part in creating these food allergy misconceptions, Stukus said.

“If patients come to see us with concerns, we can evaluate and ask questions about food allergies, but we shouldn’t be just testing randomly,” he said, adding that the first recommendation specific to allergists from the Choosing Wisely campaign of the American Board of Internal Medicine is to not perform “an indiscriminate battery of IgE tests in the evaluation of allergy.”

“There’s no clinical indication whatsoever to include a bunch of random IgE tests, regardless of the reason they come to see us,” he said.

The practice of telling patients with atopic dermatitis to eliminate certain foods from their diet also is not evidence-based and can cause patient harm, Stukus added.

“If you have a child with atopic dermatitis who is eating food without having acute-onset reaction, and they have elevated food-specific IgE, they’re sensitized but tolerant,” he said. “If you take that food out of their diet for a period of time, there’s a potential that they could have an IgE reaction the next time they eat it.”

Other outdated approaches may be to have breastfeeding mothers exclude certain foods from their diets based on symptoms in their infants, or to give a patient a blanket diagnosis of “tree nut allergy” when in reality there are a multitude of different tree nuts.

“We have to evolve with the evidence,” Stukus said, adding that it is important to show humility when acknowledging that recommendations have changed, such as regarding primary prevention of food allergy guidelines.

“Often it’s very frustrating because evidence accumulates and it contradicts what we once held to be true at the time,” he said. “We do the best we can with the information that is available, but if we don’t address that, we can come off as arrogant and we lose their trust.”

Practical tools

To combat misconceptions in food allergy, Stukus advised that clinicians increase their awareness about what misconceptions are circulating.

For one, clinicians can spend time online searching terms that patients might search in order to see the results and references these searches will uncover.

“We can think like our patients,” he said. “See what information you come back with and how confusing it is.”

Also, clinicians should be mindful about the terminology they use, Stukus said, adding that telling patients they have a “deadly food allergy” can be very damaging.

How clinicians discuss risk also matters, Stukus said.

“We can address with patients the unlikelihood of their child reacting from invisible exposures,” Stukus said. “We can do food challenges. We can talk about threshold dose and reactive dosing and use that to guide our management.”

Ultimately, it is important that clinicians listen, offer guidance and make themselves available, Stukus said.

“Every single encounter is an opportunity for us to address anxiety, anticipate their concerns and provide evidence-based information,” he said.

“It’s important for all of us to understand the influences [of misconceptions] and address them, because if we don’t provide evidence-based information and discuss that nuance with patients and with parents of children with food allergy, they’re going to be left to fend for themselves,” he added.

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