Importance of Addressing the Psychosocial Burden of HAE Among Children, With Raffi Tachdjian, MD

Hereditary angioedema (HAE) is often approached through symptom control and attack prevention. However, emerging data highlight another equally important facet for pediatric patients: the psychosocial toll.

At the 2025 American College of Allergy, Asthma, & Immunology (ACAAI) Annual Scientific Meeting in Orlando, Florida, Raffi Tachdjian, MD, MPH, from UCLA Health, presented on a recent study examining the psychosocial impact of HAE on young patients, caregivers, and clinicians.

“When we think of HAE, we've always been focused on the grown-ups,” Tachdjian told HCPLive during the meeting. “When we think of the pediatric age category, these kids often don't know how to express an attack because they don't have the experience or descriptions, and it could be a novel attack. We see a lot of negativity surrounding it.”

He observed drops in communication and attendance among children with HAE. Children with HAE often report missing both school and after-school activities. This absence raises concerns for many parents and healthcare professionals.

“That burden is higher than we thought it was,” Tachdjian continued. “This study is opening our eyes to that. It's an unmet need.”

These challenges evolve as patients age. Older adolescents begin to experience academic underachievement and ongoing school absences.

Tachdjian emphasized the importance of individualized, multi-pronged strategies. Effective interventions may include counseling, more frequent follow-up with healthcare providers, expanded parent-child communication, or increased peer and social support. He stressed that there is no single formula; instead, shared decision-making and exploration of each patient’s unique fears, such as anticipatory anxiety about future attacks, are critical for reducing distress.

Validated tools such as the Angioedema Control Test and the Angioedema Quality of Life instrument already help clinicians assess psychosocial burden, but new tools and parameters are in development. These could further guide care teams in identifying barriers early and tailoring support to improve long-term outcomes.

“I'd like to highlight that this is a big step,” Tachdjian said. “We're not by any means done, but it's a big step towards pushing this psychosocial aspect of a genetic condition that has other issues that come with it, such as fear, anxiety, depression, lack of communication, social skills, isolation, all things that we could fall into as a trap. As a healthcare team, we want to ensure that we're doing our best to prevent these negatives and really boost the positives.”

Relevant disclosures for Tachdjian include GENZYME CORPORATION, Regeneron Healthcare Solutions, Inc., BioCryst US Sales Co., LLC, Grifols USA, LLC, Takeda Pharmaceuticals U.S.A., Inc., CSL Behring, Pharming Healthcare, Inc., AstraZeneca Pharmaceuticals LP, GlaxoSmithKline, LLC., Dermavant Sciences, Inc., and X4 Pharmaceuticals, Inc.

References

Tachdjian, R. Psychosocial Impact of Hereditary Angioedema on Young Patients and Their Caregivers. Presented at ACAAI 2025 in Orlando, Florida, from November 6 – 10.