Pediatric food allergy is a serious health problem in the United States. As the number of affected children increases, more caregivers are charged with the responsibility of managing their child's food allergy.

Ann Allergy Asthma Immunol. 2010 Oct;105(4):287-294.

Variations in quality of life among caregivers of food allergic children.

Springston EE, Smith B, Shulruff J, Pongracic J, Holl J, Gupta RS.

Institute for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.

PMID: 20934628 [PubMed - indexed for MEDLINE]

Below is an interview with one of the researchers of the study Dr. R. Gupta.

Below is an interview with one of the researchers of the study Dr. R. Gupta.

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Mothers of food allergic children report extremely high levels of stress and a new study sponsored by the Food Allergy Initiative (FAI) shows that their quality of life can be significantly affected as well.  I was happy to be able to talk with Ruchi Gupta, MD about her fascinating research on this topic. The following is a transcript of my interview.

Gina Clowes:            Thank you so much for talking with me today. So let's get right into this. What was your purpose initially?

Dr. Ruchi Gupta:            This study actually came out of a  larger study we conducted to understand the knowledge, attitudes and beliefs of three groups of people: parents of children with food allergy, primary care physicians, and the general public. We wanted to see what misconceptions about food allergy exist in these three groups around food allergies.

We found that misconceptions were very prominent, especially among the general public and a little among physicians.  For parents, they had good knowledge with few misconceptions but a big piece that came out with the parents was just how much it affected their world and their quality of life.

So then we thought, well, maybe we need to do something a little bit more in depth with quality of life to really get how it affects their world.  And you know quality of life studies have been done in the past with food allergies just showing the immense impact it has on daily life and comparing it other chronic diseases and showing that quality of life for kids with food allergies is much worse, which is understandable because food is just a part of everything we do in our society.

But our goal with this was not only to understand overall quality of life  but to also see where the differences are by type of food allergy, severity, and age.  For example, as we were talking about before, I have a daughter with a nut allergy.  It really doesn't affect me as much as it may later because; she's four and I can control her world, and nuts don't show up right now as much as milk or egg or wheat.  So the differences in quality of life, too, are significant.

I feel a lower stress because my daughter just has this one allergy and right now, since she's so young, I can watch and control her world so much more carefully. I am sure this will change as she gets older.  So the other important goal  is for all of us parents who have children with food allergies to support each other.

And also reactions to the food allergy are so varied, right, so you have some kids who luckily have never had anaphylaxis and most commonly just get some hives.  So the parents are not as scared as people who have had to deal with anaphylaxis or watching their kids go through a potentially life-threatening reaction.

Gina Clowes:            That made sense, and one thing that you said jumped out at me, even though I don't think this is in the study.  But you said that you had studied previously, and there were some misconceptions even within the food allergy parents.  Did I get that right?

Dr. Gupta:            Yes.

Gina Clowes:            Okay, so one of the things that I wanted to highlight for our readers was that you did find that allergies to specific foods lowered  quality of life more.  Can you say a little bit more about that?

Dr. Gupta:            Yeah, so foods that were most common in everyday items like milk, egg, wheat, definitely impacted quality of life more.  And that's very understandable just because parents have to avoid so many more things as opposed to kids who may have a shellfish or a peanut allergy.  Even though peanut and shellfish can cause a significant amount of anaphylaxis if it ingested, they are more avoidable.

Basically, peanuts, nuts, shellfish, those type of things are not in everyday foods that kids eat.  You can make safe cupcakes.  You can make safe cakes for your child a lot easier than having to avoid some of the main ingredients like egg and milk.

Gina Clowes:            So you were able to sort of nail down the variation and the reasons for the variation in quality of life were one:  families who had been in the ER in the past year, and two: those who had kids with multiple food allergies, three: those who were allergic to milk, wheat and/or egg.  And then the fourth factor that was very interesting to me was that the more knowledgeable caregivers had a lower quality of life.  Can you elaborate on that a little bit?

Dr. Gupta:            Oh, yeah, the more knowledgeable caregivers had lower quality of life.  I also study asthma which is also part of the atopy spectrum, but what's really interesting is parents of children with food allergy do become quite a bit more knowledgeable than parents of children who have asthma.  I mean, they really work hard to educate themselves on exactly what it is and how to avoid it and how to treat it and really take care of and protect their child.

We have medications to control asthma, but not to control food allergy.  In general, parents of children with food allergy were very knowledgeable, and that did impact their quality of life.

It's interesting why that happens.  What would you think?  Have you had any experience with that?  I would love to hear.

Gina Clowes:            There is such a tremendous shock with the diagnosis, either initially or as it gradually dawns on you how this diagnosis will touch every relationship and every aspect of life. Some parents get stuck, particularly when their only method of dealing with the emotions is to control the environment. There is an emotional component, the loss, that can be significant.

A food allergy diagnosis nudges you to either call upon or develop  additional skills that some of us may not have. For example, you need to learn to advocate for your child with relatives, friends and ultimately schools. For those of us who are not naturally assertive or articulate it can seem like quite an unfair burden.

Dr. Gupta:            Yes. That's right.

Gina Clowes:            You also need to learn to live with some degree of uncertainty and acceptance. I think the Serenity prayer is great for this.  It's hard to accept this but there are going to be reactions...hopefully they will always be mild or moderate and if not, caregivers must be trained to treat properly and enact the child's emergency plan.

Your goal should never be to eliminate all risk, to guarantee safety because then you'd never let your child leave the house. It may be the hardest part of our jobs though: balancing safety and normalcy. Someone forgot to give us a rule book!

Dr. Gupta:            I really like that.  So you're thinking about that knowledge issue is probably more of you try to educate yourself, educate yourself, educate yourself as a protection, I guess sometimes you can know too much which could bring more  fear to decrease quality of life.

Gina Clowes:            I wonder if that's really it though.  I don't know. I'm trying to figure out. If it's really that more knowledge that is lowering quality of life or if perhaps some parents in their sincere desire to learn how to care for their children may have over-estimated the risk.

Dr. Gupta:            Yeah, I guess an analogy would be being a  pediatrician myself, I know the extremes of childhood illnesses, and it can go two ways.  Sometimes it goes to the point of when my kid gets sick, I do worry more  because I know the extreme that it could be.

Gina Clowes:            That's a perfect example because  we need to come up with a way is to help moms have the knowledge but put the anxiety on a shelf. Take all of the precautions, educate all caregivers, make sure all the food is safe and meds are intact and then enjoy life.

Dr. Gupta:            Exactly.  So I think it's a balance.Knowledge is critical but not to the point of living in fear.

We want schools to know how to properly recognize anaphylaxis and to have a plan in place for a reaction, and to make sure people are trained on the EpiPen, then we'd like to see how much more comfortable does it make families and how frequent do reactions happen.

In Illinois they just passed a law that schools have to have a plan in place for food allergies by the end of this year.  And so we are part of that whole endeavor, at least for the Chicago Public Schools System, and we're training every nurse in all of Chicago Public Schools on April 1st.  And then we are going to start training the counselors because the nurses aren't always in the schools.

Gina Clowes:            Right, right. That's wonderful.

Dr. Gupta:                   So I think just having that in place, and then we're going  to do some research on it, test them to see how comfortable are they.  And then maybe do some simulations in the schools of a reaction happening and see if their plan works, if they actually feel comfortable executing the plan if there was a situation.

I would love to hear any additional ideas of food allergy research you may have because I'm always looking for studies that are important and that could have a bigger impact and that parents need or families need or physicians need to anything related to food allergies.

So keep me informed.

Gina Clowes:            I will.  I will do that. Of course. Okay, so going back to your study, I noticed that you referenced another study here that only 36 percent of nut-allergic children have medication in school.  I assume that means tree nut and peanut.  Would that be correct?  Do you recall?

Dr. Gupta:            Yes.

Gina Clowes:            Okay and only 56 percent of schools have staff trained to administer allergy-related medications.

Dr. Gupta:            Yeah.

Gina Clowes:            So that's scary!

Dr. Gupta:            It is scary.

Gina Clowes:            And then of those carrying Epinephrine or EpiPens, only 54 percent have a plan for use.

Dr. Gupta:            Yes.

Gina Clowes:            That's another thing I find with parents when I'm coaching parents. When they come to work with me, they're very anxious.  Yet a good percentage of them, maybe a third of them and sometimes up to half of them, don't have a written plan and don't feel comfortable with the EpiPen, and some  don't even have a current prescription!   This is after their child has had epinephrine in the emergency room!  This amazes me because having a written plan and knowing how to administer the EpiPen can provide a layer of calm and confidence like nothing else.

Dr. Gupta:            Yes, I know.  That's definitely very, very important.   As a physician, it's a very important piece for me because why aren't these things happening?  Why aren't plans going straight into place and a new Epi prescription right when they leave the ER.  But you know, just like we do asthma teaching, why aren't we doing food allergy teaching?

Where we really drill it in and make sure they understand it and what would they do in case of an emergency.  The same things we do with asthma that are so clear,  and this is critical that parents have this same type of understanding with food allergies. Like you said, if you know what the plan is and if you know that you can execute it if you do see any signs, you feel safer.  The child is safer and it just makes for a better outcome.

Gina Clowes:            Right. Exactly

Dr. Gupta:            Those are the things that we're tackling.  I mean, that's the next phase.  A couple of studies that we're just writing up right now to get ready to go into the field to do is with primary care physicians and making sure that their knowledge of food allergy is up to date, and that they are counseling and treating in accordance with the new food allergy guidelines that just came out.

So all of that is really tough because as a general pediatrician, when we trained, and I was trained ten years ago, we didn't get a lot of food allergy training.  It just wasn't a big part of your medical education at that point in time. There is more and more, now, which I'm very happy about.  But for all the doctors that are already out there, they do need some refreshers for caring for a child with food allergy.

Gina Clowes:            I love the idea of working with the primary care physicians because my son struggled a long time without a diagnosis. We were sent to numerous specialists, dermatologists, gastroenterologists.  As a layperson, I'm sitting here nursing this baby who is covered with eczema and throwing up all day long while I'm researching everything myself.

I know doctors love it when moms are online getting their Google MDs. But I finally did think: he must have food allergies. And we drove to Mount Sinai where one of the allergists there confirmed the diagnosis.

If our pediatrician would have seen the red flags sooner it would have save my son a lot of suffering.

Dr. Gupta:            That's the story that I hear over and over again with pediatricians and primary care physicians, and then the other story that I'm starting to hear these days is, well, now they're over-diagnosing.  Now they're just doing these big rast panels and my kid can't eat anything because some numbers come back to foods that he already ate and you know now they're taking it away.

They're scared to give it to him again.  So I think the pendulum is swinging.  So it was on one end where no one really understood it and wasn't diagnosing it properly.  Now as people get upset about that, it's swinging to the other end where now we're diagnosing too much.

Gina Clowes:            My hunch is not so much that the pendulum has swung completely in the other direction because I still hear about moms going through months and even years of what I went though.

Maybe some doctors are over diagnosing if they're relying exclusively on one test, but others are still not up to speed and are reluctant to test at all. Some kids are still not being diagnosed. It's all over the place.

Back to your study.  So you've got all these different areas:  the emotional burden, the stigma and normalcy,  health and nutrition, social activities and daily burden.  Did you go into the study having an idea of which area would be the most difficult for these moms?

Dr. Gupta:            We did.  From our previous studies, we had a pretty good hunch that it was gonna be that social interaction.

We talked to parents of children with food allergies and without.  And for  parents of children without food allergies , they said they really thought food allergy was an important issue and that something should be done about, and they were really charged with I want something to be done for these kids.

But then when you went straight into asking them specifically: Do you think in your school there should be a ban for peanuts?  It was a resounding no.  I don't want my child not to be able to take a peanut butter and jelly sandwich to school!  Do you think in your school, they should have separate tables?  The majority again did not agree with this.

So the social aspects were very difficult. It's really, really tough going on vacation, going out to eat, leaving your kid at school and trusting the school.  All of these social interactions, play dates, birthday parties, I mean, such a big part of kids' lives and it's  so hard.  Everything revolves around food, unfortunately.

Gina Clowes:           Absolutely it does.  You also found that the burden was higher for parents of children who had been in the ER.  My son's been in the ER a few times.   I've given him the EpiPen and it is quite a traumatic experience.

I believe this is something that some physicians don't understand.  They see allergy parents as anxious and they think, well, if worst comes to worst you inject them with epinephrine and all will be well. And that's it. But for a lay person, seeing your child in real distress and having to inject them and hoping it saves their life is terrifying.

Dr. Gupta:            Right and that makes so much sense to me.  So we know they were seen in the emergency room, but we do not know what happened.  It could've been a reaction in school where they called 9-1-1 to take them to the emergency room which would cause probably more anxiety.

There are studies showing that if you use an EpiPen, and especially if you had a positive experience with using it like if your child actually improved immediately you feel better.

This would actually be more calming for you because you're empowered all of a sudden to be able to do something for your child in that situation, and you did it, and it worked, and you feel good that you could do it again

Gina Clowes:            I remember reading, I think it was Deena Mandell's study where she says that families sort of settle in but then with each new milestone, say a new school, or with any subsequent reactions, vigilance and anxiety goes up again.  From your perspective that would probably correlate with a decrease in quality of life.

Dr. Gupta:            The more frequently a reaction happens, the more vigilant and on top of it you are, and if you go a year or two without a reaction, you become more relaxed .

Gina Clowes:          That makes sense. So before we wrap up, I'm curious to know, did anything surprise you about the results of your research?

Dr. Gupta:            That's a good question, and what was interesting is that the quality of life did vary so much.   Today, there are a lot of us, like you and me, who are working to develop programs and training and support groups that lead to improved quality of life and we did not have these resources years ago.

There is a point where you do become comfortable and confident and the people around you in your community and your society do start to understand.  You start to see that you can deal with food allergy and not let it affect your quality of life to the degree that it may have initially. That is a real important message. It is it is very, very hard, but there is light at the end of the tunnel.

Gina Clowes:            That's wonderful and I couldn't agree more.  Thank you so much for talking with me and for all you do!

Ruchi S. Gupta, M.D. M.P.H