D2.324 - Psychological Burden Associated with Injectable HAE On-Demand Treatments: A Patient and Caregiver Interview Study

Injectable on-demand therapies for hereditary angioedema (HAE) are associated with adverse reactions and administration burden that may lead to treatment delay or withholding therapy. The objective of this qualitative study was to assess the psychological burden of on-demand treatments requiring injection or infusion on patients and caregivers. 

Individuals with HAE (≥12y) and caregivers (≥18y) were recruited by patient advocacy organizations Hereditary Angioedema Association in the US and HAE International in the UK to complete qualitative health related quality of life adaptive interviews. 

Respondents (N=25; 16 US, 9 UK) included 12 adult patients (mean age 42.4y, 83% on non-androgen long term prophylaxis [LTP]), 5 adolescent patients (mean age 13.8y, 60% on LTP) and 8 caregivers (mean age 42.8y). Icatibant was the most used on-demand therapy administered by patients, while C1 esterase inhibitor was the most common treatment provided by caregivers. 20% (2/10) of adults, who reported using icatibant, and all adolescents had a caregiver or healthcare provider administer their on-demand treatment. Respondents attributed treatment delays to undesirable treatment characteristics, including dislike of needles, injection pain, activity disruption, and treatment location. Patients (n=6) and caregivers (n=6) reported anxiety and worry related to preparing and administering treatments quickly and correctly. This was more pronounced in patients self-administering intravenous treatments, as the preparation and administration process took longer and was more complex. Caregivers also described feeling distressed (n=6 anxiety; n=8 stress) by the pain/discomfort experienced by the care recipient when administering treatment. Pain associated with injectable on-demand treatments was attributed to needle puncture (n=17), sensation of medicine (n=8), and administration site reactions (n=13). All respondents described pain and discomfort of injectable treatment leading to general dissatisfaction.

Anxiety and worry pertaining to treatment administration were the main negative psychological impacts associated with injectable on-demand treatment use, leading some participants to delay or withhold therapy. Pain and discomfort associated with administration were the most salient complaints reported by HAE patients and caregivers. An oral on-demand option may address these barriers and improve health related quality of life.