Hereditary angioedema affects quality of life and mental health

November 21, 2022

3 minutes to read



Jones D et al. P051 label. Presented at: ACAAI Annual Scientific Meeting; November 10-14, 2022; Louisville, Kentucky.

Jones reported consulting and speaking roles with Amerimmune Allergy Testing Inc. AstraZeneca, BioCryst Pharmaceuticals, KalVista Pharmaceuticals Inc. Pharming, Pharvaris, Regeneron/Sanofi, Shire/Takeda, Zurvita Corp.

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LOUISVILLE, Ky. Hereditary angioedema has a significant impact on mental health, daily activities, and quality of life, according to a study presented at the annual scientific meeting of the American College of Allergy, Asthma, and Immunology.

“There’s not a lot of big data out there about its impact on quality of life and what really drives it,” she says. Douglas H. Jones, MD, FAAAAI, FACAAI, Co-Founder of Global Food Therapy, Co-Founder and Chief Food Allergy Support Team and Director of Rocky Mountain Allergy at the Tanner Clinic, told Healio.

The percentages of time patients feel less than 100% due to HAE include 28% for adolescents and 54% for adults.

Data were derived from Jones D, et al. P051 label. Presented at: ACAAI Annual Scientific Meeting; November 10-14, 2022; Louisville, Kentucky.

Douglas H Jones

“A lot of focus surrounds whether or not these patients have swelling. How severe is it? What’s the location? How quickly can it be treated?” said Jones, who is also a Healio Allergy/Asthma Peer Perspective board member.

During the study, 32 patients (mean age, 33 years; range, 15-72) with hereditary angioedema (HAE) participated in a series of four focus groups between November 2021 and March 2022.

Participants completed online surveys before and after the series, with 68% reporting they received on-demand treatment only and 32% receiving prophylaxis with on-demand treatment for paranormal attacks. Also, the participants experienced an average of 33 attacks per year (range, 0-170).

Patients also report “feeling less than 100%” 49% of the time due to HAE, with a greater proportion of adults ages 19 and older feeling this way than adolescents ages 15-18 (54%). vs. 28%), as well as a greater proportion of patients using only on-demand treatment than those also using prophylaxis (56% vs. 38%).

When participants do not treat an attack, their plans for the day change 67% of the time, and 58% said they cannot count on participating in important events and activities in their lives due to HAE.

“Whether it was missing school or changing school, activities or work schedules, many of them said yes, if they choose not to address their attack, it will affect the rest of their day,” Jones said during the presentation.

Although not explored in the study, Jones cited multiple reasons why patients might choose not to treat these attacks.

“What resources do they have? What medication do they take? Because that might play a role. Is it an intravenous formulation? Is it a subcutaneous formulation? Does it hurt? How painful is it? Do they have refills at home? What’s on their shelf?” He said. “Will they be able to reach more? How intense is the attack? Are you advancing?”

Also, 39% of the respondents said that the unpredictability of these attacks causes anxiety and negatively affects their mental health. Among patients’ top concerns, Jones said, is the lack of access to medications, resources, and effective treatment.

“When it’s unexpected, people feel less in control, and want to be able to perform life’s functions,” Jones told Helio.

“If you have anxiety, you trigger an attack. But then there is anxiety about the attack not being addressed, and you get into a vicious cycle.” “This is a big problem.”

The researchers also asked the participants about other important effects that HAE had on their lives. For example, 19% said it takes too much time to manage HAE prescriptions, insurance, and attacks.

Also, 16% said they had become resilient and determined to stand up for themselves and others, 13% said they had to endure painful and sometimes disfiguring attacks, and 10% said they felt judged by poorly informed healthcare providers and society in general.

In addition, 10% wonder about having children who might inherit HAE.

Only 6% said they did not experience any significant effects from HAE.

Given these effects, Jones said it’s essential that providers listen to patients, beyond simply treating physical symptoms.

“First, acknowledge to the patient that you know they have anxiety. We know it’s there. We know it’s triggering,” he said, adding that providers must recognize that simply deciding whether to treat an attack can trigger anxiety in the patient.

Jones also said that in his private practice, he referred patients to mental health professionals when their anxiety required care beyond what he could provide.

“It’s part of the role we play. It really addresses mental health,” he said. “If something is out of my area, we do that referral. We offer them this help.”

The researchers plan to dig deeper into the data, including the reasons why people decide not to address their attacks.

Meanwhile, Jones encouraged providers to listen to their patients about the impact of HAE on their quality of life and mental health, as their perceptions and feelings matter.

“Treat with the challenges that patients perceive, and try to eliminate them as much as possible,” he said.

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