Survey reveals difficulties managing HAE attacks regardless of treatment
Similar struggles seen with prophylatic and on-demand therapies: Study
Despite being on prophylatic, or preventive, treatment, people with hereditary angioedema (HAE) report similar struggles in managing and recovering from acute attacks to those using on-demand therapy alone, a new survey study in the U.S. has revealed.
The researchers noted that anxiety levels among patients when anticipating the use of their on-demand treatment were generally similar between the groups, with about 50% of respondents on preventive therapy indicating they felt “moderately to extremely anxious” compared with about 45% of those only on on-demand treatment.
According to the survey findings, the main reasons for choosing not to treat all attacks included perceiving some attacks as not severe enough, anxiety linked to timely access to refills, and not having the on-demand medication with them.
“These findings,” the scientists wrote, “may help to inform future treatment discussions and may enhance aspects of the physician-patient dialog … aiding in building patient behaviors that are aligned with current guidelines and goals of treatment.”
The team called for further research into treatment anxiety among people with HAE.
“Further exploration of patient-reported reasons for anxiety associated with use of on-demand therapy despite ongoing LTP [long-term prophylaxis] is important to identify knowledge gaps, improve physician-patient communication, and in the consideration of unmet needs for future on-demand therapies,” the team wrote.
The study, “Management of hereditary angioedema attacks by patients on long-term prophylaxis versus on-demand therapy only,” was published in the journey Allergy and Asthma Proceedings.
US team conducts online survey to learn more about HAE management
HAE is marked by the excessive production of bradykinin, a molecule that regulates blood pressure by promoting the widening of blood vessels. This causes fluid to leak out from blood vessels and accumulate in nearby tissues, leading to swelling attacks.
Such attacks may be triggered by physical and emotional stress, medical interventions, hormonal fluctuations, and infections.
Management strategies for HAE encompass on-demand therapies to treat acute attacks, and long-term prophylaxis, known for short as LTP, to reduce the frequency and severity of such episodes. However, HAE patients on LTP “may still experience attacks that can be life-threatening,” the researchers noted.
“Although progress has been made in HAE-attack management with self-administered, on-demand treatments, patients still experience a substantial burden in their daily lives due to the disease and its treatment,” the team wrote.
Further, according to the researchers, “the behavioral patterns and perspectives surrounding HAE attack management by patients on LTP are not fully understood.”
To learn more, a team of U.S. scientists conducted an online survey looking into patient behaviors and perceptions associated with on-demand treatment for HAE attacks among those on LTP versus those using on-demand therapy alone.
A total of 155 people with HAE in the country were recruited by the U.S. Hereditary Angioedema Association between September and October 2022. Of them, 107, or 69%, completed the survey.
The respondents had a mean age of 41, and most were female (80.4%) and adults (98.1%). At survey completion, half of the patients (50.5%) were on prophylactic treatment plus on-demand medication, while the other half were taking on-demand medications alone (49.5%).
Takhzyro (lanadelumab) was the most common prophylactic medication, used by 57.4% of patients on LTP, while Firazyr (icatibant) was the most commonly used on-demand medication — by 81.5% of the LTP group and 75.5% of the on-demand only group.
Many patients report anxiety over treating HAE attacks
About one-third of patients in both groups reported always carrying on-demand medication when away from home. However, “somewhat surprisingly,” according to the researchers, patients on LTP reported traveling for fewer hours away from home without taking such medications with them relative to those using on-demand therapy alone (median of one vs. two hours).
The most commonly cited reason most LTP patients did not carry their on-demand medication — as reported by 77.1% — was their confidence that they would not have an attack.
Other reasons cited by both groups included a preference to be treated at home (by 65.7% of those on LTP and 78.8% of patients using on-demand treatment only), and forgetting to take the medication with them (51.5% of those on LTP and 60% of on-demand only patients). Avoiding attack triggers while away from home was the next most common reason, cited by 42.9% of those on LTP and 45.5% of those receiving on-demand treatment only.
Individuals on LTP reported treating a mean of 84.8% of their HAE attacks, while those using on-demand therapy alone treated a mean of 75.6%. The main reasons for not treating an attack included the perception that the attack was not severe enough to treat (50% of the LTP group; 77.4% of the on-demand alone group), not having on-demand treatment with them (22.2%; 32.1%), and anxiety associated with timely access to treatment refills (24.1%; 18.9%).
While most patients in both groups were aware that delaying treatment could lead to more severe attacks and prolong attack recovery, they overall delayed treatment by a median of one hour after recognizing an attack.
Also, 51.9% of the patients on LTP and 45.3% of those receiving on-demand treatment alone reported feeling moderately to severely anxious when anticipating the use of their on-demand treatment.
The reasons for that included uncertainty about treatment working quickly (60% of the LTP group; 37.2% of the on-demand alone group) and effectively (42.2%; 37.2%), and concern that the attack could reoccur later (40%; 37.2%). Both groups reported the attacks affecting the abdominal region or stomach were the ones more likely to reappear.
“The results of this survey highlight and provide valuable insights into how limitations of current on-demand treatments contribute in part to suboptimal attack management by patients, even those receiving LTP,” the researchers concluded.
The team noted the World Allergy Organization/European Academy of Allergy and Clinical Immunology guideline recommendation “that all patients should have and carry on-demand medication for the treatment of at least two HAE attacks.”
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