Hereditary angioedema impacts quality of life, mental health
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LOUISVILLE, Ky. — Hereditary angioedema has a significant effect on mental health, daily activities and quality of life, according to a study presented at the American College of Allergy, Asthma & Immunology Annual Scientific Meeting.
“There’s not a lot of big data on what impact it has on quality of life and what is really driving it,” Douglas H. Jones, MD, FAAAAI, FACAAI, cofounder of Global Food Therapy, cofounder and president of Food Allergy Support Team and director of Rocky Mountain Allergy at Tanner Clinic, told Healio.
“So much focus surrounds whether these patients are swelling. How bad is the severity? What’s the location? How quickly is it treated? But not a lot of studies really account for the whole person and what they are experiencing,” said Jones, who also is 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 that they received on-demand treatment only and 32% receiving prophylaxis with on-demand treatment for breakthrough attacks. Also, participants experienced a mean of 33 attacks per year (range, 0-170).
Patients additionally reported “feeling less than your 100% self” 49% of the time due to HAE, with a greater proportion of adults aged 19 years and older feeling this way than adolescents aged 15 to 18 years (54% vs. 28%), as well as a greater proportion of patients using on-demand therapy only compared with 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 because of HAE.
“Whether it was missing or altering school or activities or work schedules, a lot of them said yes, if they chose not to treat their attack, then it impacted the rest of their day,” Jones said during the presentation.
Although they were not explored in the study, Jones cited multiple reasons why patients may choose not to treat these attacks.
“What resources do they have? What medication are they on? Because that may play a role. Is it an IV preparation? Is it a subcutaneous preparation? Is it painful? How painful? Do they have refills at home? What’s on their shelf?” he said. “Are they going to be able to have access to more? What’s the severity of the attack? Is it progressing?”
Also, 39% of the respondents said that the unpredictability of these attacks causes anxiety and negatively impacts their mental health. Lack of access to medicine, resources and effective treatment are among patients’ most significant fears, Jones said.
“When it’s unpredictable, people feel less in control, and they want to be able to perform the functions of life,” Jones told Healio.
“If you have anxiety, you’re triggering an attack. But then there’s anxiety about not treating the attack, and you get in a vicious cycle,” he continued. “That’s a big deal.”
The researchers further asked participants about other significant impacts that HAE has on their lives. For example, 19% said that managing their HAE prescriptions, insurance and attacks is time-consuming.
Also, 16% said they have become resilient and determined to advocate for themselves and others, 13% said they have to endure painful and sometimes disfiguring attacks and 10% said they feel judged by poorly informed health care providers and by society in general.
Additionally, 10% question having children that might inherit HAE.
Only 6% said that they have not experienced any significant impacts from their HAE.
Considering these impacts, Jones said that it is vital for providers to listen to patients, beyond just treating their physical symptoms.
“First, acknowledge with the patient that you know that they’re undergoing anxiety. We know it’s there. We know it’s a trigger,” he said, adding that providers should recognize that simply deciding whether to treat an attack can induce anxiety in a patient.
Jones also said that in his own practice, he has 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’s really addressing mental health,” he said. “If there’s ever something that’s out of my area, we’re making that referral. We’re getting them that help.”
The researchers plan on diving deeper into the data, including the reasons why people decide not to treat their attacks.
In the meanwhile, Jones encouraged providers to listen to their patients about the impacts that HAE has on their quality of life and mental health, as their perceptions and feelings are important.
“Address the challenges that are perceived by the patients, and try to remove them as much as possible,” he said.