D2.440 - Burden of disease and patient preference in Hereditary Angioedema: findings from a mixed methods survey of carers and patients in the United Kingdom

Despite advances in the treatment of hereditary angioedema (HAE), there remain unmet needs. The burden of HAE extends beyond the physical attacks, as its unpredictability has profound psychological and economic impacts for both patients and carers. 

Objectives

To assess the extent to which respondents perceive unmet physical, emotional, and socioeconomic burdens of disease and to understand patient preferences for optimal management.

The survey was designed by CSL Behring and HAE UK and managed by a third-party agency. Voluntary participation was requested via the HAE UK mailing list.  CSL Behring were revealed as the sponsor only upon survey completion to minimise bias and received anonymized, aggregated results.

Of 82 adult respondents, 57% (n=47) were female and 43% (n=35) male. 72% (n=59) were HAE patients but not carers of a person with HAE, 18% (n=15) HAE patients who are carers of people with HAE, and 10% were carers but not HAE patients (n=8).

Of 74 patients, 68% (n=50) were on long-term prophylactic (LTP) and 32% on-demand treatments (n=24).  40% (n=30) reported an average of >2 attacks and 9% (n=7) >8 attacks per month over the last 3 months. 96% (n=45) of these patients with attacks needed >1 day to fully recover from each of their attacks and 30% (n=14) reported an average absence of >1 day of work/education per month. 72% (n=34) of these patients felt self-conscious socialising, 79% (n=37) cancelled social plans after their attacks and 69% (n=49) of all patients proactively avoided some activities.

35% (n=6) of carers for dependents aged > 12 years report daily anxiety about future attacks, with 44% (n=4) of carers with HAE reporting that caregiving has impacted their ability to manage their condition.

Of 24 patients not receiving LTP, 59% (n=14) were either unsure why or had been told their attacks were not frequent enough to qualify.  Only 21% (n=5) preferred a treatment plan without LTP.

Despite therapy advancements and guidelines advocating for total disease control to normalise lives, a substantial physical, emotional and social burden associated with recurrent attacks is reported by patients and carers. A need exists for greater shared decision making, where patient lifestyles are reflected in condition management and clinicians have improved access to modern treatments and mental health services to work towards an attack free ambition.