How can physicians train parents to trust immunotherapy—an allergen exposure they were previously told to avoid?
Within a few months, the US Food and Drug Administration (FDA) may approve the first and second ever immunotherapies for the desensitization of peanut allergies. Though those decisions may bring a stronger sense of prescribing confidence to both physicians and pediatric patients’ parents, it doesn’t resolve the hurdle of training parents for risks.
In an interview with MD Magazine® while at the American College of Allergy, Asthma & Immunology (ACAAI) 2019 Scientific Meeting in Houston, Douglas Mack, MD, a pediatric allergist with McMaster University, explained how practices and allergists need to prepare for the shift in treatment options.
MD Mag: Will FDA regulation and organizational guidelines improve physician confidence in using immunotherapies?
Mack: I mean, I think that one of the limiting factors for people to adopt this practice is obviously what you have to do to prepare your office, prepare yourselves, etc. But a big part of why so many people are just not looking at doing oral immunotherapies is because we don't have an approved product. At this point, we likely will in the next couple of months, we suspect. But part of the reticence is, ‘What is this going to do to my practice, how do I integrate this, and how do I keep up with the other parts of allergy that I really enjoy?’
But then also, the other part of the reticence is that we didn't have an approved product. And there is risk involved here. I think most doctors, many doctors, don't want to take those risks—that they don't feel like they have the support of the college or the academy, or the Canadian Society of Allergy, or whoever it is behind them.
And I've heard it many times: ‘What am I going to do if something goes wrong, because I don't have support?’ And it's something you have to deal with.
MD Mag: How can pediatric prescribers navigate immunotherapy discussion with patient’s parents?
Mack: You're right, because we have flipped the script on these families. We told them for years—all of a sudden we are turning this poison into a medicine, right? And I think that is something that is completely foreign to them. And we just expect them to kind of lap this up and adjust to this. We're endorsing it, you know? For years, we were endorsing avoidance—now we're endorsing, ‘Oh no you'll be fine.’
I think what’s interesting is this is an elective procedure. This is not a curative procedure, that I'm aware of. And it's quite possibly long-term. So when you look at that, and then you look at the possibility that there is risk involved here, you do have to prepare these families for this. And I think that this is what myself and my colleagues were talking about in the session today: this takes time. Just prepare them, and shift their thinking in this. And then once they've decided they want to talk about this more, we have to have even bigger discussion.
And when we counsel our families that are ready consider this, and they've kind of already had that mind shift change, it takes about an hour for me to talk to families about this—to walk them through this shared decision-making discussion, where we say, ‘What are your goals? What can I offer? What are the alternatives, what are the risks?’
And in order to do that, it takes it quite a bit of time, because there's a lot to talk about for these families. And it is essential because of the fact that in reality, if we don't have those discussions, the families will not be prepared for this therapy. And if something goes wrong, they're going to say, ‘Well you didn't tell us?’
Unless we think about having these discussions in advance, we're going to run into troubles, and I think that that's a huge part of this. The other side that we're flipping on them is not just the avoidance—it's the fact that we are sending them home and we expect them to know how to manage reactions if they occur. And I think of them as junior health care providers at this point, without having any formal medical training.
And I think most of us, when we are faced with an allergic reaction for the first time in our clinics that we've caused during an oral challenge or whatever, we don't always know how to deal with it well the first time we’re learning how to deal with this. And we learn, and we grow, we teach our nurses how to do this, and they learn and they grow, and they get experienced.
But when the family leaves my office after taking that very first dose of peanut in a very, very small amount, the next day I expect them to know how to deal with the reaction if it occurs at home. And they're doing this once in my office, 13 times at home, and then they come back to my office.
So the onus of knowing how to deal with that becomes theirs, but the onus on me is to train the parents of these patients, so that they know exactly how to deal with this. And I think that's going to be the biggest part of our counseling, to be honest with you.