New research highlights care challenges faced by children and adolescents with hereditary angioedema

(Press-News.org) ORLANDO (Nov. 6, 2025) – Two new studies being presented at the 2025 American College of Allergy, Asthma and Immunology (ACAAI) Annual Scientific Meeting in Orlando shed light on how hereditary angioedema (HAE) – a rare, potentially life-threatening disease which causes unpredictable swelling – profoundly affects the daily lives, emotional wellbeing, and medical experiences of young patients and their caregivers.

Living with HAE can cause a serious emotional and social toll on young patients and their caregivers, according to findings from researchers who conducted interviews and online discussions with 31 children (ages 2–11), 19 adolescents (ages 12–17), and 85 healthcare professionals (HCPs).

The study found that adolescents perceived a greater overall impact of HAE on their lives than caregivers reported for younger children. Participants described HAE as disrupting school attendance, sports, and social activities. Even between attacks, many children expressed ongoing anxiety about when the next episode might occur.

“While 16 of 23 children said they felt happy when symptom-free, nearly 40% said they still worried about future attacks,” said allergist Raffi Tachdjian, MD, MPH, ACAAI member and lead author of the study. “HCPs overwhelmingly reported that HAE causes emotional distress for both children and caregivers, often leading to anxiety, depression, and social isolation. Many also noted that the condition can contribute to academic struggles and missed developmental opportunities.”

The researchers concluded that “HAE affects much more than physical health – it influences how children view themselves, interact with others, and engage in everyday life. Addressing the mental health and quality-of-life impacts is critical to comprehensive care.

A second study explored emergency department (ED) and hospital experiences among young patients with HAE, drawing insights from 19 adolescents, 31 caregivers, and more than 100 healthcare professionals. About half of adolescents and caregivers reported at least one ED or hospital visit before age 12.

While some described positive experiences – such as rapid treatment and symptom relief – most reported significant difficulties. Common challenges included delays in receiving care, lack of medication availability, and healthcare professionals unfamiliar with HAE. These factors contributed to fear and stress for both patients and families.

“Three out of four HCPs expressed concern about their patients receiving inadequate care and the possibility of long-term trauma resulting from negative hospital experiences,” said allergist Patricia Stewart, MD, ACAAI member and lead author of the study. “Many noted that these encounters can lead to avoidance of medical care, even in emergencies.”

The researchers concluded that emergency visits are often unavoidable for children with HAE, but that they can be frightening and traumatic. Improving awareness and preparedness among healthcare providers could make a critical difference for families of children with HAE.

Together, the two studies emphasize that managing hereditary angioedema in young patients requires more than medical intervention—it demands attention to mental health, family dynamics, and the quality of care experiences.

Abstract Title: Psychosocial Impact of Hereditary Angioedema on Young Patients and Their Caregivers (Full abstract below)

Presenter: Raffi Tachdjian, MD, MPH

Abstract Title: Emergency Department Experiences of Young Patients with Hereditary Angioedema and their Caregivers (Full abstract below)

Presenter:  Patricia Stewart, MD

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PSYCHOSOCIAL IMPACT OF HEREDITARY ANGIOEDEMA ON YOUNG PATIENTS AND THEIR CAREGIVERS

R. Tachdjian *1, N. Davis-Logan2, C. Olson3, T. Ray4, D. Ramsey-Paige4, D. Petroni4, C. Murphy5, M. Lionetti5, N. Garberg5, 1. Los Angeles, CA; 2. Philadelphia, PA; 3. Boston, MA; 4. Durham, NC; 5. Rochester, NY.

Introduction: Hereditary angioedema (HAE), a rare disease that causes spontaneous episodic swelling, impacts patient and caregiver lives. We assessed the psychosocial impacts of HAE among children with HAE and their caregivers, adolescents with HAE, and healthcare professionals (HCPs) in the United States.

Methods: Online discussions and video in-depth interviews (VIDIs) were conducted with 31 children (aged 2-11 years), together with their caregivers (aged ≥18 years), and 19 adolescents with HAE (aged 12-17 years, reporting on their experiences when <12 years of age). HCPs treating children with HAE participated in VIDIs (n=24) or online surveys (n=85).

Results: Adolescents and caregivers reported HAE negatively impacts young patients’ mental health and their participation in school, sports, and social activities; adolescents indicated greater impact than caregivers reported. While 16 of 23 children reported feeling happy between attacks, 9 of 23 children reported still thinking about potential attacks. Nine in 10 HCPs reported that HAE attacks distress caregivers and patients, disrupt caregiver and patient daily routines, and negatively impact patients’ quality of life. HCPs viewed patient anxiety and depression as the primary psychosocial impacts of HAE; these impacts may accompany others, such as social isolation and academic underachievement.

Conclusion: Young patients, caregivers, and HCPs reported substantial psychosocial impacts of childhood HAE experiences. Adolescents perceived overall greater impact than caregivers. HCPs are concerned that young patients with HAE will develop anxiety or depression, and HCPs report that HAE affects young patients’ overall quality of life.

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EMERGENCY DEPARTMENT EXPERIENCES OF YOUNG PATIENTS WITH HEREDITARY ANGIOEDEMA AND THEIR CAREGIVERS
P. Stewart *1, T. Ray2, D. Ramsey-Paige2, D. Petroni 2, C. Murphy3, M. Lionetti3, N. Garberg3, 1. Jackson, MS; 2. Durham, NC; 3. Rochester, NY.

Introduction: Hereditary angioedema (HAE), a rare disease that causes spontaneous episodic swelling, can be life-threatening. We assessed emergency department (ED)/hospital experiences of young patients with HAE from the perspective of adolescents with HAE, caregivers of children with HAE, and healthcare professionals (HCPs) in the United States.

Methods: Online discussions and video in-depth interviews (VIDIs) were conducted with 19 adolescents with HAE (aged 12-17 years, reporting on their experiences when <12 years of age) and 31 caregivers of children with HAE aged <12 years recruited by the Hereditary Angioedema Association. HCPs treating children with HAE were recruited via online panels to participate in VIDIs (n=24) or online surveys (n=85).

Results: About half of adolescents and caregivers reported going to the ED/hospital at least once before age 12. Adolescents and caregivers reported having some positive experiences, such as quick treatment and symptom relief. However, most had negative experiences characterized by treatment delays, medication unavailability, challenges with medication administration, HCPs unfamiliar with HAE, and heightened stress due to the ED/hospital environment. These negative experiences led to anxiety or fear of EDs/hospitals and wanting to avoid future ED/hospital visits. Three in 4 HCPs reported concern about their patients receiving inadequate care, treatment-related trauma, and the long-term impact of ED/hospital visits on patients’ mental health.

Conclusion: ED/hospital visits are common for young patients with HAE. Negative ED/hospital experiences can be traumatic with lasting impacts. HCPs are concerned about adequacy of care, treatment-related trauma, and long-term psychosocial impact of these experiences on young patients.

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