On-demand treatment delays for HAE attacks boost severity, duration
Study shows 79% of patients report treatment-related anxiety
Delaying on-demand treatment of hereditary angioedema (HAE) swelling attacks increases their severity and duration, and its symptoms are also more likely to spread to other parts of the body, according to a study that also found about 79% of patients reported treatment-related anxiety, which was associated with delaying treatment.
“Suboptimal management of attacks intensifies the HAE disease burden, underscoring the need for improved treatment options, guidance, and removal of [on-demand] administration barriers,” the researchers wrote. The study, “On-demand treatment of hereditary angioedema attacks: patient-reported utilization, barriers, and outcomes,” was published in Annals of Allergy, Asthma, and Immunology.
In HAE, sudden swelling attacks occur, most often in the deeper layers of the skin or mucus membrane.
Guidelines recommend that patients treat an attack as quickly as possible with on-demand therapies to reduce morbidity and prevent mortality. Despite these recommendations, studies show that people with HAE commonly postpone or forgo treatment.
“There is little information that captures the underlying reasons surrounding these choices,” the researchers wrote. “Furthermore, the full impact on an array of attack outcomes from withholding or delaying [on-demand treatment] is largely unexplored in a real-world setting.”
Treating HAE swelling attacks
Here, researchers examined survey data from 94 HAE patients (80 adults, 14 adolescents) who treated at least one attack with an approved on-demand therapy during the previous three months. Data from 20 adults who had an attack in the past three months that wasn’t treated with on-demand therapy were also analyzed.
The most common on-demand treatment for adults in the treated group was icatibant, which is sold as Firazyr and is available as generics. Adolescents were often treated with C1 inhibitor therapies. The mean time to treating a last attack was 3.8 hours, with only 17 adults and one adolescent receiving on-demand treatment in under an hour.
Most survey participants (67%) believed they treated their attack early, even though only 25.4% received treatment in less than an hour. The mean time to treatment was 2.9 hours for those who reported treating their attack early.
“The disparity between survey respondents’ perception of treating early and actual time to [on-demand] administration is striking,” the researchers wrote.
For the 32.9% of respondents who reported not treating their attack promptly, 90.3% waited two or more hours.
Delaying on-demand treatment
A higher percentage of those who reported later treatment noted barriers to treatment than those who treated their attack within an hour. The most common reason given for delaying treatment was uncertainty if an attack was real, which was reported by 52.9% of the 85 respondents who didn’t treat their attack immediately.
As the time to treatment increased, the mean attack duration also increased. For the patients who were treated in less than an hour, the mean attack length was 0.7 days. Attacks lasted a mean of 2.7 days for those who waited eight hours or more.
For patients who had mild attacks, 33.3% who were treated in less than an hour saw their attack increase in severity. This happened to 66.6% of those who waited an hour or more for treatment. The same trend was seen for those having moderate attacks.
Attacks spread from the initial site to another site for 27.5% of adults and 42.8% of adolescents in the treated group. Attack spreading was slightly less likely for patients who treated their attacks within an hour relative to those who waited.
Anxiety about on-demand treatment was associated with treatment delays. The mean time to treatment for respondents who weren’t anxious was 2.4 hours, while the mean time to treatment for extremely anxious patients was 5.4 hours.
The most commonly given reasons for anxiety among adults were related to on-demand treatment availability and cost, and to effectiveness. In adolescents, the main reasons for being anxious were related to therapy administration and efficacy.
“The underlying reasons highlight substantial remaining unmet needs for [on-demand treatment],” the researchers wrote.
Data from the untreated group showed that untreated attacks lasted a mean of 2.3 days. For untreated patients who described their last attack as being mild, 50% said it became moderate or severe. The main reasons for not using on-demand treatment were to save medication for a severe attack, the presumption the attack would remain mild, and uncertainty about whether the attack was real.
“Our findings suggest that [on-demand] management of attacks remains suboptimal, thereby adding to the burden of disease for individuals with HAE,” the researchers wrote.