Q&A: Protocol helps kids overcome phobias related to their food allergies
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Allergies do more than trigger physical responses. They also can take a psychological toll, including crippling fears of potentially lethal reactions such as anaphylaxis.
Psychologist Katherine K. Dahlsgaard, PhD, addressed these issues at the American College of Allergy, Asthma & Immunology Annual Scientific Meeting during her lecture, “Anaphylaxis Phobia and its Impact on Daily Life: Identification, Management and Intervention.”
Dahlsgaard and nurse practitioner Megan Lewis, CRNP, are the cofounders of the Food Allergy Bravery (FAB) Clinic at Children’s Hospital of Philadelphia. During sessions at the FAB Clinic, children are safely exposed to allergens via “bravery challenges,” enabling them to overcome their fears.
Healio spoke with Dahlsgaard and Lewis to find out more about these anxieties and how they can be conquered.
Healio: What’s the difference between routine caution and an actual phobia when it comes to anaphylaxis?
Dahlsgaard and Lewis: A bit of anxiety is normal and healthy for kids with food allergies, as anxiety in small doses reminds them to proceed with caution when they encounter new foods. The vast majority of children with food allergies adapt well and live quite happy and healthy lives. In contrast, the hallmark of excessive anxiety is identified by a child's behavior. When a child engages in chronic and medically unnecessary avoidance around foods and social situations that involve food as their main ‘‘coping’’ strategy to alleviate anxiety, they are at risk for developing an anxiety disorder, namely Specific Phobia of Anaphylaxis.
Healio: How can this phobia interfere with maintenance and treatment?
Dahlsgaard and Lewis: Anaphylaxis phobia can interfere with many facets of life. It can impact socialization, family events, school and certainly even medical care. Patients and families struggling with this are often reluctant to consider diagnostic food challenges to confirm if they are truly allergic. They may request additional testing, which can lead to unnecessary avoidance, and develop fears of allergic reactions from testing such as with skin prick testing. In terms of treatment in general for allergy, we focus on the fact that patients have to avoid consuming food or exposing it to a mucus membrane. Many patients believe in myths surrounding their food allergy — about the risk of casual contact with allergens, airborne risk when it’s not being cooked and disbelief about specific peanut oils and their safety.
Healio: How can this phobia interfere with quality of life?
Dahlsgaard and Lewis: When children with food allergy (or their parents) chronically avoid situations in which the risk for accidental ingestion of allergens is very low, such as being in the same lunchroom with children who are eating the food they are allergic to, all family members can feel a temporary relief that inadvertently drives increased anxiety. Even when the avoidance becomes excessive and compromises daily functioning, it may appear to be ‘‘working’’ if the child does not experience an anaphylactic reaction. Risk assessment grows increasingly faulty, and the family vigilance required to maintain this level of avoidance encourages an anxious preoccupation with worst-case scenarios.
In our clinical practices, we see children who won’t try new (and quite delicious!) foods, even when a check of the ingredients confirms it doesn’t contain their allergen, or who won’t eat at restaurants or who won’t attend parties or sleepovers, even when caregivers have taken the prescribed precautions to keep them safe. These kids then miss out on many of the joys of childhood, and it is so unnecessary!
Healio: Do these phobias persist into adulthood?
Dahlsgaard and Lewis: Often they do, and the excessive fears of cross-contamination will cling to a child as they develop into their teen years and when they launch from the home as older adolescents. The major developmental achievement of adolescence is identity formation, and their fearful habit of limiting themselves can really compromise this. In our therapy practices, we have encountered teenagers who won’t go on overnight school trips or on vacations that are too far away from the home. The joy of traveling and learning about other places and people, which teens really love, is taken away from them by their fear. We see teens that are putting themselves at risk for an eating disorder because they are so unnecessarily restrictive about what they eat. I see kids who are terrified to leave for college. They have such a compromised view of their own ability to navigate the world, right at a time when they deserve to feel hopeful and confident. It is very sad.
Healio: How do bravery challenges help mitigate these anxieties?
Dahlsgaard and Lewis: The technical term for bravery challenge is exposure. Exposure sounds like an awful thing, because people equate it with having ingested the allergen. But in psychology, particularly in evidence-based treatment of anxiety, exposure is a very good thing because it refers to gradual exposure to safe things or situations that a person is nonetheless avoiding because of anxiety. Think about kids with dog phobia. They need systematic, supervised and safe exposure to dogs to learn for themselves that dogs aren’t dangerous.
We use strategic, gradual exposures to safe enough things or situations that a child is either avoiding entirely or experiencing with dread. These proximity exposures include the whiff challenge, where we smell allergens. During the grocery store challenge, the child and the parents go to a grocery store and pick out a food that is safe for them to eat that they have been avoiding. In the touch challenge, kids touch their allergen and then wash their hands. They learn to be confident that that they are a competent hand washer and that hand washing absolutely works to remove protein from their hands.
Healio: Have you codified these protocols?
Dahlsgaard and Lewis: When we started the FAB Clinic, there was a lack of evidence-based effective measures and treatments for these kids. Previously when food allergists were trying to assess anxiety in kids with food allergy, they were using generic measures of anxiety that never mentioned food allergy. Results were sometimes contradictory and confusing, probably because there was no disease-specific measure of anxiety.
Our goal was to improve evidence-based assessment and evidence-based treatment. We then designed the first condition-specific measure of anxiety for food allergies, the Scale of Food Allergy Anxiety, or SOFAA, and we validated it. It’s available for free to any physician or clinician online at www.chop.edu/sofaa.
Healio: Do you have any plans for promoting these strategies?
Dahlsgaard and Lewis: We’re about to publish a treatment outcome paper where we did this treatment in groups. We put kids with food allergies and excessive anxiety and their parents together in groups. We then did these bravery challenges together in session and sent them home for homework and had these families come back the next week and do more. These families were incredibly successful. We used standardized measures for the results, and we saw reductions in symptoms. We’re going to manualize that treatment, and our hope is that we could train other practitioners around the country.
Exposure is the active ingredient in the treatment of anxiety disorders, but research shows that only 10% to 30% of community-based therapists use exposure, and most of them cite concerns that exposure will be too scary for the child, exposure will ruin their rapport with the child or that it’s a mean thing to do. None of those things are true. We have excellent evidence from multiple randomized controlled trials that children can tolerate exposures and benefit from them just as much as adults do.
It is very hard for parents to access good exposure treatment providers for any anxiety disorders, and providers who conduct exposures involving food allergies are even more rare. Even the most seasoned exposure therapists are very concerned about doing exposures around food allergies. That’s because therapists are people too. That is why we want to go and train people in food allergy centers across the country because exposure works so well with these families, and it works so well with our patients.
Healio: In addition to bravery challenges, is there anything else that doctors can do to mitigate the effects of these phobias and improve care?
Dahlsgaard and Lewis: Any clinician in general allergy practices, including physicians, advanced practice providers and nurses, should spend time at diagnosis and follow-up visits on education about food allergies. Spending a few additional minutes to debunk myths and reduce fears surrounding the allergen can really make a big impact. Clinicians also should consider using screening measures to assess for anxiety surrounding food allergy and refer, as many may not feel comfortable bringing up their concerns or daily difficulties at their annual visit.