OBJECTIVES: Hereditary angioedema (HAE) is a rare genetic disease associated with unpredictable attacks of tissue swelling. We examined the impact of the patients’ last treated attack on their ability to work and whether this was diminished among those having attacks while receiving long-term prophylaxis (LTP).

METHODS: Patients with type I/II HAE completed an online survey. Participants ≥12yrs old treated ≥1 HAE attack with an on-demand (OD) therapy in the prior 3 months. The Work Productivity and Activity Impairment Questionnaire: General Health assessed the impact of the last treated attack on participants’ ability to work during 7 days following attack onset.

RESULTS: Respondents included 80 adults and 14 adolescents, of which 42 patients self-reported as employed at the time of their last treated attack. Of those, 24 (57%) managed HAE with OD only, while 18 (43%) were receiving LTP. Sixty-seven (72%) rated their attack severity as moderate to very severe (72% OD; 71% LTP). Median (interquartile range) time from attack recognition to OD treatment was 2hrs (1-4hrs). Twenty (48%) patients were moderately to completely unable to do their job due to their last attack (46% OD; 50% LTP). Average impairment for overall ability to work was 39% (36% OD; 43% LTP), and the average absenteeism was 15% (13% OD; 17% LTP). Forty patients worked ≥1hr in the 7 days following the attack. Of those, 14 patients (35%) indicated that their last treated attack modestly to severely impacted their productivity (35% OD; 41% LTP); mean impairment (presenteeism) at work was 35% (33% OD; 37% LTP).

CONCLUSIONS: Despite treatment with OD therapy, HAE attacks impacted the work lives of employed patients resulting in impairments in their ability to work, substantial absenteeism, reduced productivity, and presenteeism among those who were able to work. The impact was similar among those managed with OD treatment only and those receiving LTP.