Injectable On-Demand HAE Treatments Undermine Quality of Life, Study Finds
A new qualitative analysis underscores the burden that injectable on-demand treatments place on patients with hereditary angioedema (HAE) and their caregivers, researchers reported in Allergy, Asthma, & Clinical Immunology.
Interviews with 25 participants in the United States and United Kingdom—including 17 patients and 8 caregivers—highlighted widespread reluctance to use injectable therapies despite their clinical indication. “Emotional and logistical reasons for delaying or forgoing injectable on-demand treatment” included fear of needles, challenges with portability, and difficulty with administration.
All participants reported at least one negative impact on HRQoL due to injectable on-demand treatment. Common themes included anxiety, pain at the time of injection, and disruption to daily activities such as work or school. Caregivers and adolescent patients described significant strain on personal relationships and independence. “Adolescent patients reported greater impacts than adult patients,” the study noted.
Although current therapies are indicated for self-administration, real-world barriers to use remain. “Some adult and all adolescent patients reported needing assistance with administration of their injectable on-demand treatment,” the authors wrote. This reliance undermines the autonomy that self-administered treatments are intended to provide.
Importantly, all participants expressed a clear preference for an oral alternative. Desired features included ease of use, pain-free delivery, improved portability, and the ability to treat earlier in the course of an attack—factors participants believed would meaningfully reduce the personal and logistical burden of disease management.
“This study highlights the unmet need for an on-demand treatment that allows for earlier, pain-free administration,” the authors concluded. Findings support the development of oral therapies that can enhance patient independence and improve HRQoL outcomes for both patients and caregivers managing HAE.
Reference
Yong PFK, Craig TJ, Busse PJ, et al. Impact of injectable HAE on-demand treatments on health-related quality of life: a patient and caregiver interview study. Allergy Asthma Clin Immunol. Published online November 29, 2025. doi:10.1186/s13223-025-00997-w
