Hereditary angioedema (HAE) is characterized by unpredictable and potentially severe or life threatening attacks that negatively impact daily life. With several novel acute and preventive HAE treatments available, the impact of HAE on health-related quality of life (HRQoL) is of interest.
A web-based survey of randomly selected members of the US Hereditary Angioedema Association was conducted (March through April, 2017). Respondents were ≥18 years old, had type I/II HAE, ≥1 attack during the last year, and received an HAE treatment within the last 2 years. HRQoL was measured using HAE-QoL and SF-12 questionnaires. Additionally, the Hospital Anxiety and Depression Scale (HADS) and the Work Productivity and Activity Impairment (WPAI) questionnaire were used. Descriptive analyses were conducted.
Of 707 patients screened, 445 (62.9%) completed the survey. Most were 18-64 years (92.8%), female (78.2%), and 68.5% received prophylactic treatment. Mean (SD) number of attacks was 11.1 (13.9) during the past 6-months and 78.7% reported an attack during the past month. HAE-QoL scores were highest (better QoL) among those reporting 0-1 attacks during the past 6-months, and decreased at higher attack frequency. Highest impairment (lowest scores relative to maximum) was reported in the ‘perceived control over illness‘ domain. Mean (SD) SF12 mental and physical composite scores were 44.9(10.9) and 48.6(9.9), respectively. Respondents reported mild-to-severe anxiety (49.9%) and depression (24.0%). Mean (SD) percentage impairment measured by WPAI was 25.4(28.1) for work-productivity loss and 31.8(29.7) for activity impairment.
In this study, patients with HAE reported anxiety and depression and impairments in HRQoL and work productivity.
Burden of hereditary angioedema
Findings from a US patient purvey