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Changing mindsets about symptoms improves oral immunotherapy experience and outcomes

Published online: January 22, 2019

When patients experience non-life-threatening allergic symptoms during oral immunotherapy, like itchy mouth or nausea, they might often think: “These symptoms are just an uncomfortable part of treatment that I have to deal with.” That mindset about symptoms - as unfortunate side effects that are irrelevant to treatment - may be common for patients undergoing a variety of medical treatments and can contribute to increased patient anxiety levels and high treatment dropout rates. But there is another mindset about symptoms that may frequently go unnoticed: symptoms can be associated with healing. For example, a fever, while uncomfortable, signals that the body is actively fighting infection. Similarly, non-life-threatening symptoms during oral immunotherapy can signal that treatment is progressing. Research suggests that desensitization during oral immunotherapy begins with the uptake of allergens in the mucosa of the oral cavity, which could be associated with non-life-threatening symptoms like stomach pain or congestion. Could educating patients that symptoms can be “positive signals” of desensitization help to improve oral immunotherapy, making patients less anxious about symptoms during treatment and improving their treatment outcomes?

In a study recently published in The Journal of Allergy and Clinical Immunology: In Practice, Howe et al. conducted an intervention testing exactly this question. The researchers recruited 50 children and adolescents with severe peanut allergies to complete 6 months of oral immunotherapy through at-home dosing. Patients and their parents came in to the clinic once a month to learn more about the treatment, and during these visits, families were taught one of two different mindsets about symptoms. One group was informed that symptoms can be a positive signal that treatment is progressing normally toward desensitization. Another group was informed that symptoms are mere side effects of treatment. Families completed activities that reinforced these different mindsets about symptoms. For example, patients were asked to write advice to kids who might go through the treatment in the future that echoed the different messages they were told about symptoms.

Importantly, both groups of families were given the same practical instructions for treatment, such as tips for reducing symptoms during dosing (e.g., drink a glass of water after taking your dose). The same steps to take for safety were emphasized, such as when to recognize potentially life-threatening symptoms and to use injectable epinephrine. Both groups also received the same amount of social support during treatment, including 24/7 on-call support from a patient support team. The only thing that differed between the two groups was whether non-life-threatening symptoms were discussed as mere side effects or positive signals of treatment efficacy.

Overall, both groups of families had excellent treatment outcomes. All of the patients reached the one-peanut maintenance dose, and most within the scheduled time of 24 weeks, except for two patients from the group informed that symptoms are mere side effects. But instilling the mindset of symptoms as positive signals appeared to confer some additional benefits. Patients and their parents who were informed that symptoms can be positive signals of desensitization were less anxious when patients experienced any symptoms during treatment. Parents from this group were less likely to call the patient support team with concerns about symptoms. And this mindset benefitted patients physiologically as well. Patients who were informed that symptoms can be positive signals were less likely to experience non-life-threatening symptoms as treatment progressed toward the maintenance dose. Blood samples volunteered by some patients showed that “positive signals” patients had a greater boost in peanut-specific blood immunoglobulin G4 (IgG4), a biomarker associated with tolerance. So, adopting the mindset that symptoms can be positive signals of treatment efficacy seemed to benefit both patients’ psychological and physical health.

Several recent clinical trials have shown that coping with allergic symptoms during oral immunotherapy can be quite anxiety-provoking for patients and their families. This new intervention provides a timely and cost-effective solution. By informing patients that symptoms can be positive signs of treatment progress, providers helped to change patient mindsets about symptoms and relieved this anxiety. Further, patients who adopted the symptoms as a positive signals mindset had better physiological outcomes of treatment, corroborating a number of other studies showing that changing mindsets affects physical health. These results add to a growing body of research that shows providers can deliberately shape patient mindsets about a medical treatment to improve its course. The same treatment may prove more effective when providers help their patients to adopt adaptive mindsets about the challenges they face during treatment.

The Journal of Allergy and Clinical Immunology: In Practice is an official journal of the AAAAI, focusing on practical information for the practicing clinician.