5 Reasons Patients Shun Critical Food Allergy Testing
A parent takes a child for his annual allergist appointment and after the evaluation is complete, the allergist says, “I have good news.”
The allergist explains that the child may be outgrowing one of his allergies – a result that could open up new dietary options. The doctor suggests that the child undergo an oral food challenge, in which progressive amounts of the allergen are eaten over several hours to see whether the patient truly now tolerates the food.
The physician leaves, thinking that food challenge may well improve the family’s quality of life. However, the family never makes the appointment for the child to take it.
New York allergist Dr. Scott Sicherer has seen this scenario time and again in his own practice. With the assistance of colleagues at the Jaffe Food Allergy Institute at the Icahn School of Medicine at Mount Sinai, he decided to investigate why parents sometimes weren’t taking up the offer for a food challenge – considered the most definitive test for food allergy.
The Jaffe researchers surveyed 102 parents of food allergy patients at the clinic. The children were, on average, about 8 years old and had multiple allergies. Each of the families had been offered an oral food challenge, had the opportunity to schedule it, but had not taken it.
“Having a food challenge can improve quality of life, it can improve nutrition, it adds variety to the diet, there are social benefits to it,” notes Sicherer, the chief of pediatric allergy and immunology at Mount Sinai. So he wanted to discover: Why did people either decline or not bother with the challenge?
There were five key reasons discovered – as explained below. Two were on surprisingly opposite ends of the spectrum: either fear of the test, or the decision to “home test” to see if the child could consume the allergen. (The latter is never recommended by allergists, since anaphylaxis is a risk.) Following are the study results, now published in JACI: In Practice.
One of the main barriers was time, since oral food challenges take four to six hours to complete. A majority of parents (57%) identified this as a problem, however only 36 percent of survey participants said it was the only reason they took a pass on the opportunity. Sicherer suspects this statistic will vary by location, since the Jaffe clinic is situated in congested New York City.
Don’t Need the Food
Excluding scheduling, the majority of the parents surveyed (57%) said they deferred their child’s food challenge because they were “not interested” or didn’t see the food offered as important. These allergy parents had already learned how to adjust their child’s diet to exclude allergens and, according to the survey, many of them did not see the need to change things.
Sicherer says the results make him think there wasn’t enough conversation about what certain foods could mean to the diet, now and throughout a lifetime. For instance, if he offers a milk challenge and the family or patient says the family is content to just continue drinking soy milk, it warrants a larger conversation. If a child has grown to tolerate dairy, it would open up cheese, yogurt, and other nutritious foods that include milk protein as an ingredient.
Quality of life also improves when a major allergen no longer has to be avoided. “So I think having that discussion is important,” Sicherer says.
What the survey showed:
- 27 parents said their child would not eat the food because they had no interest or were picky.
- 24 parents did not think the food was important to their child’s diet.
- 16 parents said the child did not think the food was important to their diet.
- 14 parents thought the food would be impractical to eat due to cross-contamination concerns.
Since the families were dealing with multiple allergies, about 13 percent raised concerns about the practicality due to cross-contact of foods in processing, such as tree nuts and another allergen like peanut; or that one tree nut (e.g. walnut) might be tolerated, but another nut might not be.
“Families worry about cross-contact and that’s definitely a concern but it’s also something that might be manageable,” the allergist says. Tree nuts, for example, are a good source of protein and part of healthy diet, if they can be eaten safely. It takes some investigation, but not all manufacturers process peanuts and other allergens in the same facility. “People might not see the nutritional value,” says Sicherer.
Fear of the Oral Test
Since half of the children in the study had, in past, been to the emergency department because of a severe allergic reaction, fear was understandably a factor in turning down the test. Oral food challenges do require an allergic patient to consume an allergen, in small gradually increasing amounts under medical supervision.
“There are risks and benefits of a food challenge, and one of the risks is to have an allergic reaction,” says Sicherer.
What the survey showed:
- 40% of the respondents deferred a challenge because of fear/emotional impact.
- 33 people said their child was afraid of having an allergic reaction.
- 15 people worried that a reaction could have a negative psychological effect.
While the prospect of an allergic reaction is scary for both patients and parents, Sicherer emphasizes that physicians typically offer an oral food challenge if testing shows the outcome should be favorable. Plus, the test is done safely, by serving the food gradually, and stopping if a reaction appears to be occurring. To ensure safety, the test is done under direct medical supervision.
Sicherer says the survey results again show that there needs to be a better conversation about the benefits and real, versus perceived, risks of this testing.
Some parents, after seeing allergy test results, conclude that the numbers just won’t add up to a successful food challenge – even if that contradicts what the child’s allergist is saying.
What the survey showed: 29% of the parents surveyed said they deferred a challenge because they doubted their child would pass.
“The breakdown of that was that people were interpreting the skin or blood tests themselves and thinking that it didn’t look right,” says Sicherer. He explains that results can be complicated, so a high number might not always equate to big concerns.
“Those are very important things to discuss with the doctor because, for example, the same test number means different things for different foods.”
Tried a ‘Home Test’
A concerning number of parents indicated that rather than undergoing a proper food challenge under medical supervision, they simply conducted their own at-home test – an approach that is never recommended by allergists.
What the survey showed:
• 17% tried the food at home without coming in for a feeding test.
• Half of these patients had allergic reactions.
“The message there is that when a physician is offering a food challenge, that doesn’t mean that they think that there’s no chance of a problem,” says Sicherer. “They think that the food introduction needs to be medically supervised.” He explains that there is a set process that is designed to keep patients safe, and this cannot be done at home.
So what does all this mean for patients being offered food challenges?
“You really should come to the doctor’s office prepared to ask questions,” says Sicherer. “It’s a very common procedure, so it’s important to get your list together or feel free to come back and talk it out.”
Sicherer recommends patients ask:
- What do the tests results mean?
- What are the odds of passing a food challenge?
- What will happen during the test?
- What should I bring?
- How should I prepare my child?
- How much should I worry?
- What kind of symptoms can happen?
- What happens afterwards?
- How long will I be here?
- What foods do you think would be the best ones to challenge test?
- How will this help the diet?
- How will this help my family?
For health-care professionals, Sicherer hopes this survey will highlight the family’s concerns that need to be addressed to encourage them to complete a food challenge.
“This is teaching the allergist that there’s a relatively clear list of reasons why people may not go ahead with it, and we can specifically ask those questions to families who don’t ask on their own.”