A Q&A on Quality of Life Among Adolescents With Peanut Allergy

The American Journal of Managed Care® (AJMC) dicussed the real-world burden of reduced quality of life among adolescents with peanut allergies with Anna Nowak-Węgrzyn, MD, PhD, professor of pediatrics at the New York University School of Medicine, Department of Pediatrics, Langone Health, New York. Nowak-Węgrzyn's study, entitled, "Peanut Allergy Burden Survey: Impact of Peanut Allergy on Global Quality of Life in Adolescent Patients," found patients with peanut allergy reported substantially lower Pediatric Quality of Life Inventory scores than the general population. The abstract was released through the American Academy of Allergy, Asthma & Immunology (AAAAI), which canceled its 2020 Annual Meeting due to COVID-19.

AJMC^®: Why did you set out to study the real-world burden of peanut allergy on adolescent patients in particular?

This is a very important area of study, and it sort of ties to the burden of food allergy in general. As physicians or clinicians taking care of patients, we understand how profoundly this diagnosis affects obviously the patient, but also the caregivers and the entire family. Food allergy is a disease that is really unique, in a sense that you're not sick all the time. But you're living with the potential for a life-threatening, catastrophic event at every minute, every second of your life, so it's really very unique. There were studies previously that indicated that the effect of the negative effects of food allergy on quality of life is higher for food allergy compared to chronic diseases in children or adolescents, like diabetes or heart disease. It is really very interesting, and I think it's very important to find out.

Adolescents—obviously each age group is very important—but adolescents are this very special age group because that's where they start their independence. They are feeling the limitations of this diagnosis significantly, because now they can go out with their friends. There's this lack of spontaneity because you have to be in control and in charge of every minute of your life.

Obviously, it's also important, with new and emerging treatments for food allergy, to really understand and describe this need for therapy, because people who are not affected by this will say, “Well, what's the big deal? You just don't eat the food and carry your epinephrine around, and you should be okay.” This is not really so. Because not eating the food, avoiding the food and carrying epinephrine around is affecting those patients and their families in a very significant way.

The other thing, people wonder why the study is large because you always think, “Oh, well, people who participate in clinical trials, they are different. Maybe they are, pre-selecting themselves.” If you study quality of life among the patients who participate in clinical trials of treatment, novel therapy for food allergy, you will be criticized by saying that this is a pre-selected population. They participate in trials because they're special in a way that maybe their perceived burden is much higher than an average person affected by this disorder. At large, it's just sort of reflecting the real-world status quo or how patients are feeling about this.

AJMC®: You found adolescents with peanut allergy have substantially lower pediatric quality of life inventory scores than the general population of similarly aged individuals. Did you anticipate such a wide gap between the 2 cohorts?

Well, I'd say yes, based on the clinical experience. As a clinician, for the past 20 years I've been seeing patients, mostly pediatric patients with all kinds of food allergies, and, and I also firsthand I see the effects of food allergy, so it's not surprising to me. But I think it may be surprising to others to see a very significant difference.

AJMC®: We've seen in the past few weeks that individuals’ actions collectively can build up to impact someone in a risk group. Families with children who have peanut allergies have always had these concerns. What do you think families can do to address these quality of life issues they can control and how much can they expect the communities around them to help with this issue?

That's a great question and it's a tough to answer. I think there's this huge personal responsibility that you have to be prepared. You have to educate yourself. The answer is, the point is not to live in fear, but really understand the risks and understand the mitigation strategies, the behaviors that you can adopt to minimize the risk of exposure: having the medications always available, knowing how to recognize the reaction from knowing the classic situations when you're at higher risk for being exposed to something. If you're allergic to tree nuts, you shouldn't be going out to eat at an Asian restaurant because of the high risk of cross contamination and also those cuisines are using a lot of the tree nuts in their recipes.

There's definitely a big personal part of it, but I think educating others, so they understand in a way that is responsible, so people really understand that this is a real threat for those who are highly allergic, is important. We're not talking about, “My kid is allergic to chocolate and he gets hyper whenever he eats chocolate.” We're talking about a situation when somebody can have really life-threatening reactions.

Also educating yourself and others about the sources of exposures, understanding that although exposure is mostly through eating, some symptoms may also occur through skin contact and inhalation, but they are incredibly rare, and they happen in just select patient populations.

Knowledge, education, understanding on the part of the patients and families but also compassion. Knowledge and education for adults who are around them and also being compassionate and understanding what they're going through and making it as normal of a teenage life experience as possible. We don't want those children excluded. The idea is not to limit them so they cannot go about their lives but making the environment as safe as possible for them.

AJMC®: Do you have anything else you'd like to add about your research or anything that stood out that you wanted to highlight?

I think that when you look at the quality of life, there are different questionnaires for different age groups, but you can see that this condition affects emotional health and emotional quality of life most significantly. But actually, across all of those domains, whether physical or social, there are big differences. School is also very much affected. Just understanding how pervasive the impact is. You cannot just do one thing. It's really, across all aspects of your well-being, as a healthy person. It has physical implications; you have to carry the medications. It's a physical burden in a sense, because you’re going to be free and spontaneous but also worrying about things, not being able to participate in parties or social gatherings without preparation.

Obviously, school is a big deal. Do you have to have special arrangements or are you being excluded from some activities because of your diagnosis? It's a tough condition to have. Physicians who are taking care of patients with food allergies understand it, but I don't think everybody understands how big of an impact this diagnosis is. I think to develop effective strategies of coping with the burden, you have to first describe the burden and then say, this is a problem. Without this as a first step, you will never get to the next steps of "How do we deal with it, what is the effective strategy to decrease the burden?" I'm proud of this research.