Caregivers of toddlers ‘ready to go’ for peanut oral immunotherapy, yet meet many hurdles

Key takeaways:

• The 3-hour focus group comprised a diverse group of six caregivers.
• The caregivers expressed interest in beginning care.
• Long wait times and lack of physician support were frustrating.

ANAHEIM, Calif. — Parents of toddlers with peanut allergy are eager to them get oral immunotherapy, according to a poster presented at the American College of Allergy, Asthma & Immunology Annual Scientific Meeting.

Yet long wait times often hinder their efforts to get prompt treatment and leave them frustrated, Sara Klein, MBA, director of strategic insights, Food Allergy Research & Education (FARE), told Healio.

“Currently, the only approved oral immunotherapy is for peanut allergy for ages 4 to 17 [years], so we wanted to understand what parents of children under 4 think about this being an option for their child,” Klein told Healio, “because clinical evidence suggests that this actually might be the optimal time for treatment.”

FARE invited 1,220 caregivers in its patient registry to participate in a 3-hour focus group in April 2023, and 66 expressed interest.

Sara Klein

“We assembled a group of six people trying to get a range of different experiences with OIT,” Klein said.

These six caregivers had children with peanut allergy who were aged younger than 6 years and who had been diagnosed before age 2 years. Also, these caregivers were chosen based on diversity in their geographic location as well as their understanding of, interest in and experience with OIT.

Expectations about the chance of accidental exposure and the chance for severe reaction based on a modified form of the Food Allergy Independent Measure Expectation of Outcome were criteria for selection as well.

A multidisciplinary team of clinicians, community partners and methodologists developed a moderator guide for the focus group to understand patient journeys and perspectives regarding OIT.

The first participant was aware of OIT but had not researched or discussed the treatment. Also, this participant said that their child had a fair chance of accidentally eating something that they were allergic to and of having a severe reaction after doing so.

The second participant had researched and discussed OIT with their allergist but remained undecided about treatment. This participant said that their child had a small chance of eating something that they were allergic to but a 100% chance of having a severe reaction if they did.

The third participant also had researched and discussed OIT with their allergist, but the child refused the oral food challenge. This child, the participant said, had a fair chance of accidentally eating something that they were allergic to and a small chance for a subsequent severe reaction.

Participant four had researched and discussed OIT with their allergist but decided to wait, adding that there was a small chance that their child would accidentally eat something they were allergic to with a 100% chance of a severe reaction if they did.

The next participant was planning on starting their child on OIT in a month, but likelihood for accidentally eating an allergen and for a severe reaction were not available.

The final participant’s child currently was in OIT with small chances for accidentally eating an allergen and for having a severe reaction after doing so.

Overall, the caregivers said that they learned about OIT soon after diagnosis and that this was an optimal time for them and for parents of very young children overall to learn about OIT.

The caregivers also said that they were in “research mode” but long waitlists and conflicting information about treatment from multiple allergists frustrated them. Additionally, some caregivers said they were frustrated that their allergists did not support their initial interest in OIT.

“The parents are ready to go. They’re like, ‘My child is terrified. It’s scary,’” Klein said, adding that they wanted to do something about it and that they saw early childhood as a good time for interventions.

“It makes sense. That’s when we do vaccines,” Klein said. “None of the parents said their child had an aversion to the allergens, which tends to be a big barrier for bigger kids.”

But despite this interest, the caregivers did not find their way to OIT with the allergist, Klein said.

“I’m not blaming the allergist, obviously. It’s a complicated interaction. But they basically all felt like they hadn’t been supported,” Klein said.

With wait times of up to a year to get into OIT, possibly due to the large number of families seeking treatment and the smaller number of allergists offering it, Klein said, many caregivers felt they had missed an important window for effective treatment.

“Wait times seem to be a huge barrier,” Klein said.

The impact of treatment on education was another concern, as older children may have to take time off of school to attend appointments, unlike younger children, Klein continued.

“Now it’s really difficult,” she said.

Further, caregivers said that they were concerned with their child’s willingness to comply with treatment demands and with their ability to self-report symptoms. The caregivers also imagined that they would have less control over their child once elementary school begins.

Klein and her colleagues concluded that consensus-driven conversations between allergists, caregivers and children are crucial in optimizing the timing of peanut OIT initiation.

Age-specific tools and resources at the time of diagnosis also can help families navigate the complexities of these treatment decisions, the researchers continued. FARE actively works to provide that support, Klein said.

“We want to make sure that parents have access to information and everything that they want for their child,” she said.

While this focus group explored what caregivers wanted for their children, Klein would like to explore the allergist’s perspective next.

“I would love to survey the physicians,” she said. “That’s my hope.”