Emergency Care Still Falling Short for Children With HAE, With Patricia Stewart, MD

New research showed that children with hereditary angioedema (HAE) frequently experience delayed or inconsistent emergency department care during acute swelling episodes, largely due to limited clinician familiarity with the condition and its treatments.1

Investigator Patricia Stewart, MD, from the Mississippi Asthma & Allergy Clinic, presented these findings at the 2025 American College of Allergy, Asthma, & Immunology Annual Scientific Meeting in Orlando, Florida, from November 6 – 10. During the meeting, HCPLive sat down with Stewart to discuss what is currently known about how emergency departments treat young patients with HAE during acute attacks and what factors contribute to variation in care quality or timeliness.

“The takeaway message from this particular study was that these emergency department visits in children often lead to long term negative impressions of their condition, and this impacts them from a psychosocial standpoint for quite a number of years because of how things were handled in the emergency department at that young age,” Stewart said.

The negative experiences often derive from emergency department physicians not being familiar with HAE and not knowing what medications to give patients. Some emergency departments did not even have the appropriate medications stocked. The study also found that emergency department physicians completed unnecessary lab draws.

In the study, Stewart and colleagues gathered perspectives from pediatric (n = 23) and adolescent (n = 19) patients with HAE, their caregivers (n = 31), and healthcare providers (n = 109) to better understand what happens when children present to the ED during acute swelling episodes and how those early encounters shape their long-term psychosocial well-being.

The research drew on online discussions and video surveys that asked participants to reflect on their childhood ED visits, specifically before age 12 years. Investigators interviewed allergists, pediatricians, and nurse practitioners about their impressions of how children with HAE are managed during emergencies.

Across all groups, the message was consistent: care in the ED remains highly variable, often delayed, and sometimes distressing. In the survey, 53% of children aged 6 – 11 years and 33% aged 2 – 5 years feared when an attack may occur, 50% and 36%, respectively, missed school, 47% and 44% went to an ED during an HAE attack, 45% and 31% missed social activities, 43% and 21% were embarrassed from an HAE attack, 37% and 25% were unable to function from an HAE attack, and 20% and 16% were hospitalized for an HAE attack.Children frequently experienced prolonged swelling episodes due to delays in administering appropriate on-demand medications.

“One of the things that we can do to try to educate the emergency department providers is to provide our hereditary angioedema patients with an emergency action plan that they take to the emergency room with them, that alerts the provider of the condition and the type of medications that are used to treat hereditary angioedema,” Stewart said. “Likewise, this emergency action plan also can alert the provider in the emergency department about medications that aren't used to treat hereditary angioedema. That can lead to expedited care in cases of swelling.”

At the conference, HCPLive also spoke with Raffi Tachdjian, MD, MPH, from UCLA Health, on the psychosocial impact of HAE in children.2 Similar to Stewart, Tachdjian emphasized the importance of addressing the psychosocial burden of HAE, which is higher than previously thought.

Relevant disclosures for Stewart include being on the Speaker's Bureau for Biocryst (Orladeyo) and CSL Behring (Andembry). She also recently been on advisory boards for CSL Behring and KalVista.

References

1. Stewart, P. Emergency Department Experiences of Young Patients with Hereditary Angioedema and Their Caregivers. Presented at ACAAI 2025 in Orlando, Florida from November 6 – 2025.

2. Tachdjian, R. Importance of Addressing the Psychosocial Burden of HAE Among Children, With Raffi Tachdjian, MD. HCPLive. November 18, 2025. https://www.hcplive.com/view/importance-addressing-psychosocial-burden-hae-among-children-with-raffi-tachdjian-md. Accessed November 18, 2025.