Shared decision making is an important concept in the care of patients with food allergies, where potential treatments require significant patient commitment and understanding. Researchers at the 2024 AAAAI Annual Meeting presented data on the importance of different strategies to incorporate shared decision making that may help optimize management.

Following these presentations, featured expert Edwin Kim, MD, MS, was interviewed by Conference Reporter Associate Editor-in-Chief Mona Shah, PharmD. Dr Kim’s clinical perspectives on these findings are presented here.

Shared decision making is important in all of medicine, and it has become especially important with food allergies given the increase in therapeutics that are either already here or coming. There has been a lot of discussion about shared decision making with respect to the management and treatment of food allergies, and discussions at the 2024 AAAAI Annual Meeting seemed to mostly focus on these areas, particularly on oral immunotherapy (OIT). But I also think that shared decision making is equally important when it comes to the prevention of food allergies.

Regarding prevention, the 2015 LEAP study suggested that the early introduction of peanuts is a good thing and can dramatically decrease the risk of peanut allergy in children who are at high risk. The concept of early introduction would make sense for other foods as well. The subsequent EAT study, which expanded the early introduction concept to other highly allergenic foods beyond peanuts, suggested that this may also be the case for eggs, particularly among children at high risk. Early introduction is discussed in published National Institute of Allergy and Infectious Diseases (NIAID) guidelines, and, although it has taken a while, it is creeping into clinical practice.

I think that the early introduction of these foods sometimes leads to strained situations in clinics in cases when providers may be very strongly encouraging—almost going beyond encouraging—early introduction. It is important to understand that it is not easy for families to implement the introduction of a food at a minimum of 3 times per week until age 5. When there are multiple children in the house, 2 working parents, or a single parent, this burden is further amplified. Some families, especially those with a background of atopic disease, are likely to be on board. But for low-risk families, I think that there is a question of how hard we should be pushing early introduction and if we should be pushing it at all. Allergists can talk about the pros and cons of not introducing the food and what the real risk of developing the allergy might be. However, early introduction really should be a shared decision-making process. Our job as allergists should be to make the right diagnosis, present the data and all the options, and possibly give our recommendation to each family, but early introduction needs to be a decision that is made jointly.

With respect to the management and treatment of food allergies and shared decision making, one key point is that not treating is an option, meaning that continuing to avoid the allergen can be a perfectly fine option. I think that this is an important concept because all available therapies require some level of work and have risks, so they may not be for everyone. Again, our job as allergists is to make the right diagnosis and then present all the options.

Further, there may be a misunderstanding or a mismatch regarding what families interpret as the benefits of treatment. All the treatments today are really a buffer of protection in case of accidental exposure while a patient is practicing usual avoidance. However, patients and even providers might not think of treatment that way. Some might be interpreting treatment as, “Once I’m on the treatment, I’m going to be able to start eating this food to some degree.” It is very important to make it clear to the patient up front regarding what to expect from treatment.

It is also important to discuss the risks and burdens of treatment. We are good at speaking to the physical risk. For example, with OIT, there is a risk of having anaphylaxis or gastrointestinal side effects. The component that needs more emphasis, however, is treatment burden. OIT can be a difficult, everyday treatment. It usually involves eating a food that the patient really does not like or may have an aversion to. For a child, it might take, for example, 30 minutes every day just to get them to eat it. There is also a need to restrict exercise around the time of dosing for 3 hours and a recommended 1 hour of observation afterward. For busy families, finding that window of time can be challenging and can lead to inconsistent dosing and, perhaps, a false sense of security from treatment. Therefore, as part of ongoing discussions with patients using shared decision making, I think that we need to be realistic and very clear about the benefits of treatment up front, paying equal attention to the treatment risks and burden. We do not think of these treatments as curative, so patients must approach them as long-term treatments and determine whether they can keep up with them.

In the case of clinical practice, shared decision making needs to be an ongoing process and should occur whenever a patient comes back for follow-up visits. Is the patient still where they were 6 months ago, and will they keep moving forward? The answer is probably yes, but I think it is important that we do not assume so because things change. As the patient ages, they may be in a different living situation, have side effects, or experience other things that may change their decision. So, again, I think that it is very important that shared decision making continues to happen.

An abstract by Voorhees et al from the AAAAI meeting looked at the team approach to food allergy care, which I absolutely agree with (abstract 354). They concluded that there may be an advantage to having a psychologist as part of the team. This is a very real issue because anxiety is a big driver when it comes to food allergies. So, treatment itself is only part of the story. To have access to a mental health professional to go over anxiety management and coping skills would be a dream. Ultimately, an important part of shared decision making is to be able to understand the anxiety that comes with disease and treatment and have that be a part of the process.

Another abstract presented at the meeting discussed quality of life and patient-reported outcomes during peanut OIT (abstract 368). Classically, when we have talked about quality of life in food allergies, we have relied on the Food Allergy Quality of Life Questionnaire (FAQLQ). While it is a validated tool, it was developed many years ago, before OIT, epicutaneous immunotherapy, or biologics had come on board. So, it is not necessarily designed for today’s food allergy space, where we have all these different treatment options out there. It also does not report on treatment burden, which is equally important to capture. I think that there is a huge unmet need to develop a tool that accounts for those factors.