UK adults with food allergy lack psychosocial support

SAN ANTONIO — Current health care services do not meet the psychological support needs of adults with food allergy in the United Kingdom, according to data presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting.

These results reflect similar findings of an earlier study conducted in the United States, Linda Herbert, PhD, psychologist and director of the psychosocial clinical program in allergy and immunology at Children’s National Hospital, told Healio.

“Several years ago, my coauthor Mary Jane Marchisotto, MBA, and I conducted a survey in the U.S. to find out whether or not individuals in need of mental health services related to food allergy were able to access them and found, not shockingly, they were having challenges,” Herbert said.

“We decided to take this globally to see if this is a concern throughout and are now collaborating with individuals across multiple countries,” she continued.

Survey results

In the initial phase of the Global Access to Psychological Services for Food Allergy Study (GAPS), the researchers surveyed more than 1,500 people across 10 different countries and in six different languages.

Linda Herbert

These surveys revealed that, like patients with food allergy in the United States, people with food allergy around the world want help with their mental health concerns related to food allergy but cannot find it.

During the current phase of the study, the researchers recruited 23 adults with food allergy in the U.K. through patient organizations and interviewed them online about the impact that food allergy has had on their lives and about their experiences with health care services and psychological support.

Three big themes emerged from these interviews, which were recorded and transcribed verbatim, Herbert said.

First, patients said that primary care physicians did not take them seriously, whereas other health care professionals minimized or dismissed their anxieties.

“There were experiences with the health care systems that were challenging,” Herbert said, noting one respondent who summarized an interaction with health care professionals as “You’ve got anaphylaxis, here’s some EpiPens, bye.”

“That was absolutely it,” Herbert said. “It’s challenging for families.”

Another respondent said, “In terms of any emotional support, there wasn’t anything at all there and if anything, I felt stupid and like I was wasting their time and yeah it was absolutely no help at all.”

The second theme was centered around society.

“There’s this, as we expect, a kind of lack of awareness and knowledge in the general public and particularly in hospitality,” Herbert said, adding that medical professionals appeared to lack knowledge about food allergies as well.

One respondent noted the lack of guarantees that there is no cross-contamination in foods they eat and the perception that servers do not even try to ensure foods are safe.

“I don’t think they realize that it is deadly,” another respondent said.

A third respondent called this attitude ironic because increased awareness should include increased caution with these foods, if only to avoid potential lawsuits.

The third theme common to these responses was unmet needs, including access to knowledge, resources and holistic health care, which includes psychological help, Herbert said.

One respondent said that online support would be great, especially due to a lack of available time. Another said that psychological help should automatically be offered with allergy care.

“Being able to talk to somebody about coping with it, how to cope with it, you know, living your life would just, I think would be so much better,” a third respondent said.

Next steps

As the prevalence of allergies have increased over the past couple of decades, Herbert said, these needs for mental health care related to allergies also have increased.

“We have more people that have food allergies, and it is raising awareness. But it doesn’t mean that all the problems just kind of go away because everybody gets it. It just means there can be some new challenges that arise,” Herbert said.

In fact, she continued, there is general confusion among the public about the many different kinds of diets that individuals have to follow.

“They don’t understand what an IgE-mediated allergy is vs. an intolerance vs. Celiac, which is also very significant, of course, or even non-IgE-mediated allergies,” she said.

The public backlash against the increase in food allergy prevalence also is concerning, she said, as people refuse to understand or accept the reality or the seriousness of the disease.

“One of the things that is kind of unique about allergy is that it seems that it’s okay to mock it in media,” Herbert said. “Every time that there is a movie that uses allergy as a plot point, that is something that we then hear about from families.”

Herbert noted the 2018 movie Peter Rabbit, in which Peter and his friends use a slingshot to launch blackberries into the mouth of a character with a blackberry allergy just to induce anaphylaxis.

“Public perception is really significant here, and it is really joked about in a way we don’t joke about things like cancer,” Herbert said.

In the third phase of the study, the researchers aim to develop an online psychological intervention for families with food allergy.

“We’re starting to develop more measures that are specific to food allergy that can be administered quickly,” Herbert said. “It’s absolutely a concern that if you screen and identify something, you need to be able to do something.”

Even if issues are identified, Herbert said, follow-up remains a challenge.

“Ultimately, there aren’t very many psychologists who focus on this right now. We have to increase that pipeline,” Herbert said.

Herbert encouraged allergists to reach out and find mental health professionals in their community who might be helpful and who may be able to provide educational resources about allergy to these patients.

“But it’s also important for us as mental health professionals to become more interested in these health conditions and then try to reach out to allergists,” she continued.

Herbert urged professional organizations such as the AAAAI and the Society of Pediatric Psychology to work together and create this pipeline. Also, she said, allergists who need immediate help can try the Food Allergy Counselor Directory, the Anxiety and Depression Association of America, and Psychology Today.

Overall, the researchers said, easily accessible and low-cost psychological resources are necessary to support these patients. Medical professionals should be educated about food allergy so they do not dismiss the impact of food allergy on mental health.

“I would ask allergists to take time to ask patients about their food allergy experiences and acknowledge the stressors that families face when managing food allergies,” Herbert said.

“I would also encourage allergists to provide resources to families who are experiencing stress and psychological distress for psychosocial support, be that hiring mental health professionals into their clinics or providing referrals to community mental health professionals,” she said.