Communication may dissuade food allergy testing for children with atopic dermatitis

Key takeaways:

• Patients are influenced by extreme stories they see on social media.
• Testing children with atopic dermatitis for a food allergy is unnecessary and dangerous.
• Always acknowledge the fears families have.

BOSTON — Allergists should resist the pressure to test children with atopic dermatitis for food allergies, David R. Stukus, MD, FACAAI, said during the American College of Allergy, Asthma & Immunology Annual Scientific Meeting.

“We all know the perils. We agree upon that,” Stukus, director of the Food Allergy Treatment Center at Nationwide Children’s Hospital, said during his presentation. “How do we handle that when those patients and families come to see us?”

Stukus noted that physicians now compete for their patients’ attention, especially when those patients “have the world’s information available at their fingertips.”

“We are no longer being seen as experts. We’re competing with influencers online. We’re competing with social media,” he said.

Online reviews, Press Ganey scores and revenue value unit models increase the pressure to conduct “ritualistic testing,” Stukus continued.

“We have to find a way to balance this,” he said.

The role of social media

Physicians need to acknowledge that the families they treat go online for information, including social media, Stukus said.

“They go on TikTok or Instagram and they start searching for atopic dermatitis,” he said. “It’s not going to take very long before they get into this extreme world where they have other parents giving very emotional testimonies.”

As a result, families come into the clinic with preconceived notions and extreme views and opinions about, for example, eliminating food from their child’s diet or from their own diets while they are breastfeeding, Stukus said.

“We have to be ready to combat that,” he said. “In reality, there’s so much nuance and context.”

Stukus also acknowledged that atopic dermatitis has no known single cause or cure and that families can become desperate.

“This is where they become victims, and they become victimized by snake oil and miracle cures and unnecessary testing,” he said.

Stukus encouraged allergists to have detailed conversations with these families, listen to their concerns, and discuss the science and the harms of unnecessary testing.

“You can watch their body language. You can ask them questions. You can connect with them on a personal level, build that trust and discuss the harm of unnecessary testing and elimination,” he said. “Provide the help that they need.”

Allergists can even use the strategies of social media during these conversations by thinking like an influencer and providing clear messaging, with “clickbait headlines,” anecdotes and links to valid sources of information, Stukus said.

Crafting the messaging

Families also want food allergy testing for other reasons, he continued, such as a family history of allergy, anaphylactic reactions among older siblings, chronic gastrointestinal symptoms, and incorrect assumptions or outdated information.

“This is really where the messaging and the science need to line up,” he said. “This is where we can take our understanding of evidence and reality.”

Previous messaging has focused on how babies are small, they cannot communicate, and they have tiny airways, so they are at higher risk for severe reactions. Instead, Stukus said, allergists should emphasize that the most common presentations include rash, hives and vomiting.

“We don’t get patients because they end up in the ICU the first time they eat peanut butter. We get them because parents notice something’s wrong,” Stukus said. “We can provide them that guidance and give them that support they need.”

Also, previous messaging has indicated that families should introduce one new food every 5, 7 or 21 days based on the premise that food allergies can emerge at any point.

“That’s not evidence based. That comes from nowhere,” Stukus said. “We also know that 98% of children will never develop peanut allergy regardless of how you feed them.”

Allergists should then take the opposite tack and tell families to feed their infants different tastes and textures and get those foods into their diets.

“Then if there are concerns that arise, we can figure it out, because we know that early introduction to allergen exposure is the best way to prevent food allergies,” he said.

Families also may believe that they should rub some of the suspected allergen on their child’s skin to see if there is a reaction. But Stukus noted that irritant dermatitis is very common, particularly among children with atopic dermatitis.

“We just want them to eat the food,” he said.

The message that food allergies can occur in anyone at any time also does not help, he said.

“What we’re telling parents is your child is a ticking time bomb, and we’re scaring them even further from giving these foods,” he said. “We need to reassure them.”

Additionally, families may believe that allergies cause eczema.

“Eczema is not caused by food allergies,” Stukus said, adding that current guidelines indicate that food should be restricted or removed only as a last resort.

Allergists also can adjust their messaging based on the family that they are seeing. When it is the first baby and the family has no concerns, for example, allergists can discuss early introduction and preventive care with tips and guidance.

When it is the first baby and the family has some anxiety, Stukus continued, allergists can discuss the risks and benefits of different approaches while providing as much reassurance as possible.

When older siblings have had allergic reactions to food, Stukus added, those experiences should be proactively acknowledged, with reassurance and a discussion of the risks and benefits of different approaches.

“They’ve been traumatized by that. They can’t unsee that, and that stays with them,” he said. “The last thing they want to do is experience that with the younger baby as well. We can help them along those lines, but it requires us to really assess the situation.”

When families still want testing

Some families may still insist on IgE testing. Stukus offered a script that allergists could use to meet these families on their terms.

“There is no medical indication to test before introducing any food to your baby,” he suggested. “However, I meet enough parents to know that some need to see a negative result to give them confidence.”

Allergists should then tell families that they are happy to test for very select foods if a negative result will help them go home and feed their baby the suspected foods.

“If we see an elevated result, I’m not going to diagnose allergy,” Stukus continued. “But we can easily have you introduce that food in my office, if that’s OK.”

Stukus emphasized that it is important to use the words “elevated result” in this script and not a “positive result.”

“This resonates really well with families,” he said. “Taking food out of the diet for eczema is actually the wrong decision almost all of the time.”

Allergists also should emphasize the rewards of introducing potential allergens into infant diets vs. the risks during these discussions, Stukus said.

“If they do have a reaction, we can lose the parental trust. But what’s the reward? What if they don’t?” he said. “What if we help prevent food allergies?”

Family histories may drive the desire for testing, Stukus also said. But specific food allergies are not inherited. Also, younger siblings have lower risks for food allergy, and allergists cannot diagnose an allergy in someone who has never eaten the allergen.

Further, Stukus said that testing may alleviate parental anxiety, but false positives, delayed introduction and screening creep may follow.

“If you’re going to test for peanuts, we should also test for tree nuts, because they have the same letters — N-U-T — even though those are different foods,” he said. “It’s never ending.”

Oral food challenges, which Stukus called the gold standard for testing, are another alternative.

“If you want to figure out if your child’s allergic, come spend time with me. We’re going to feed them here in the office,” he said.

Again, messaging matters. Allergists should not focus on what will happen if there is a reaction, including administration of epinephrine and activation of EMS.

“Phrase it as, ‘Food challenges are extremely informative and empowering. Even if symptoms occur, we’re going to learn about your child’s threshold to guide management,’” he said. “‘If no symptoms occur, it’s going to change your life. This is the most rewarding part of my job.’”

Focus on treatment

Handouts that describe eczema treatments and underscore the harms of eliminating foods from children’s diets are available for families.

“All they care about is they want their kids’ eczema to get better,” Stukus said. “You can say, ‘Look at all these different things that we can try. By the way, this isn’t my opinion. This is evidence-based information. This is what the experts have to say.’”

Families respond very well to this messaging, Stukus said.

“It has been established that if you have a child with eczema who is not experiencing immediate onset reactions, but yet they’re sensitized, they’re tolerant to that food, you pull that food out of the diet, we are causing harm,” he said. “We are creating food allergies in a subset of those infants. We have to acknowledge that.”

Some families may remain skeptical, especially families whose children developed allergies after following advice to avoid allergens.

“If we show humility, it can go a long way,” Stukus said. “We have to acknowledge we do the best we can with the information available at the time.”

Allergists should tell families that our understanding of eczema has evolved tremendously over the past decade and the conversation may be different from what they were expecting. Also, families should be told that testing not only is no longer recommended but that it could actually harm their child.

“Lastly, I have a dozen tricks up my sleeve to get your child’s eczema under control,” he advised allergists to tell these families. “Of if you’re not comfortable with that, we have a good referral system in place to dermatologists or others in the area.”

The goal is to offer these families hope for what they are really scared about, Stukus said.

“Parents are emotionally driven,” Stukus said. “They don’t want to do anything wrong. They don’t want to make the wrong decision.”

Challenges and rewards

Despite the importance of these conversations, Stukus said that they are time consuming and take a lot of effort. He advised allergists to involve their staffs in these strategies, practice their scripts and have handouts about atopic dermatitis guidelines ready to distribute.

“People just want to do what’s best for their child,” he said.

Discussions should then focus on the harms of unnecessary food allergy testing when children have eczema while acknowledging the families’ concerns during engaging conversations.

“Try to stop clicking the boxes,” Stukus said. “If you can, turn around, face the parent, face the patient. Listen to what they’re concerned about, and offer them clarifications and explanations.”