HAE study shows patients often wait to treat swelling attacks
Survey found on-demand treatment delays correlated with attack severity
Delays in administering on-demand treatment are common in hereditary angioedema (HAE), with 51% of patients receiving treatment more than two hours after the onset of an attack, according to a survey in Italy that found that delaying treatment correlates with greater attack severity.
The findings underscore the need to better educate “patients on the importance of complying with treatment guidelines, enhancing the recognition of early attack symptoms, and shifting the perception of what constitutes “early treatment,” the researchers wrote. The survey findings were published as a letter to the editor titled, “Delays and Barriers Related to the Treatment of Hereditary Angioedema Attacks in Italy,” in Allergy.
In HAE, sudden swelling attacks occur in the deeper layers of the skin or mucous membranes. Current guidelines recommend on-demand treatment be administered at the earliest signs of an attack to minimize the risk of poor outcomes. Data from studies in the U.S. show that many patients delay administering on-demand therapies, however.
Impact of delaying treatment
To assess the impact of these delays on attack severity and to identify barriers to early on-demand therapy, researchers surveyed patients with HAE types 1 or 2 who were recruited through the Italian Network for Hereditary and Acquired Angioedema (ITACA) registry (NCT03828279) from September 2023 to January 2024.
The outcomes were assessed based on the timing of treatment relative to the onset of swelling attacks, specifically comparing patients who administered treatment in less than an hour, within one to two hours, within two to five hours, within five to eight hours, and in eight hours or more.
Out of 101 respondents, 14% were adolescents and 86% were adults. More than half (52%) were on long-term preventive treatment. At the time of on-demand treatment, the attacks were classified as mild in 18% of cases, moderate in 64%, and severe or very severe in 18%.
During their last treated attack, 13% of patients sought hospital or emergency services for on-demand treatment, and 51% required caregiver support. In 29% of cases, the attack spread primarily to the periphery or trunk from its initial site. Also, 19% of patients saw a temporary improvement, with the attack returning within 24 hours.
Even though guidelines recommend immediate treatment once an attack is recognized, the respondents reported a mean delay of 2.9 hours. On-demand treatment was administered in less than an hour of the attack starting in 10% of the cases and 51% said it was administered within two to five hours. Still, 71% of respondents believed they’d treated their attack early. Yet, only 14% among these administered on-demand treatment within an hour.
Why wait to treat a swelling attack?
Attack severity was correlated with the time to on-demand treatment, with 72%-77% of patients who received treatment after five hours or more describing their attack as being severe or very severe, compared with 30% of those who were treated within the first hour. Attacks lasted longer for those treated within one to five hours and after five hours or more than those who treated them in under an hour.
The most common reasons for delaying treatment included uncertainty about whether the attack was genuine (40%), believing the attack would be mild (37%), and being worried about using treatment prematurely in case a severe attack was imminent (22%). Logistical barriers, such as reluctance to interrupt ongoing activities, lack of assistance for administering treatment, and problems accessing a private location for treatment, were cited by 37%. Additionally, 3%-5% expressed concerns about avoiding needle pain or potential side effects.
Adolescents and patients receiving on-demand therapies into a vein were more likely to delay treatment due to administration-related barriers than adults and those receiving treatments under the skin.
The findings emphasize the “need to proactively address barriers contributing to [on-demand] delays,” wrote the researchers, who acknowledged the need for injections often constitutes a significant barrier to early treatment and said an oral option could alleviate this obstacle and ease the burden on patients, healthcare systems, and caregivers.
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