The following presentations occurred at AAAAI 2024
Characteristics of Hereditary Angioedema Attacks Among Long-Term Prophylaxis Users:
Among HAE patients who had treated a recent attack, the location and duration of the most recent attacks were similar between long-term prophylaxis (LTP) and on-demand only users
Earlier on-demand treatment was associated with a shorter attack duration, regardless of LTP use
Delayed On-demand Treatment of Hereditary Angioedema Attacks: Patient Perceptions and Associated Barriers:
Despite their perception of treating attacks 'early', many patients did not meet guideline recommendations for prompt on-demand treatment after recognition of an HAE attack
The most common barriers to earlier treatment were uncertainty if attack was real, thinking the attack would be mild, and wanting to save treatment for a severe attack
Anxiety Associated with On-Demand Treatment for Hereditary Angioedema (HAE) Attacks:
Both adults and adolescents with HAE reported moderate to extreme anxiety when anticipating use of parenteral on-demand treatment, irrespective of use of on-demand only or on-demand plus LTP
The results of this study highlighted the association between delayed treatment and treatment-related anxiety, with a higher proportion of patients who delayed treatment experiencing moderate to extreme anxiety
Anxiety Associated with Refilling On-demand Therapy for HAE Attacks Contributes to Treatment Delay and Non-Treatment:
Anxiety associated with not being able to refill on-demand treatment quickly impacted treatment decisions, which contributed to treatment delay or resulted in non-treatment of HAE attacks
One-third of patients using icatibant did not treat or delayed treatment due to anxiety about refills
Characterizing the Negative Impact of Delayed On-Demand Treatment of HAE Attacks:
People living with HAE understood the importance of treating HAE attacks early and recognized that earlier treatment translates to quicker recovery and resolution
Delayed on-demand treatment (> 1 hour) lengthened the time to 'feeling in control' of an attack and the time to feeling fully recovered
The Impact of On-demand Treatment on Quality of Life of People with HAE:
People with HAE needed to make adjustments to their daily lives including avoiding situations where their injectable on-demand treatment may be discovered by others
Embarrassment associated with carrying on-demand treatment was among the reasons HAE patients delayed administration of on-demand treatment
Characterizing the Perspective of Patients With HAE on Prophylactic Treatment:
Only 35% of LTP patients always carried on-demand treatment when away from home, while 43% of prophylaxis patients cited avoiding potential triggers as a reason for not carrying on-demand treatment at all times
Nearly half of patients on LTP patients experienced moderate to extreme levels of anxiety when anticipating on-demand treatment administration
Treatment Patterns of Patients Requiring Redosing of an On-demand Treatment After the Return of an HAE Attack: Constance Katelaris,
Almost one third of people with HAE experienced the return of an HAE attack requiring 1 additional dose of on-demand treatment
HAE attacks treated within 1 hour returned less frequently compared with attacks treated after 1 hour
'The results of these surveys clearly conveyed the challenges faced by patients trying to manage their HAE attacks with injectable on-demand treatments. The resulting non-compliance with treatment guidelines may lead to poor clinical outcomes, even among patients receiving LTP,' said
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