Population characteristics
A total of 208 HAE patients participated in the survey, 128 (61%) were from the UK and 80 (39%) from Spain. For both UK and Spain, 65% of participants were females and 35% were males. The mean age of participants was 46 years (range 16-79). Participants had been diagnosed with HAE for a mean of 25±13 SD years. The majority of patients (65%) had a university, post-graduate or professional qualification. Most (over 80%) lived with their family or partner, whereas 14% lived on their own.
61% of respondents were professionally active with 45% employed full-time and 16% - part-time. More than half of the participants (61%) engaged frequently in physical activities such as exercise, sports, manual work, or hobbies that demand physical effort, however, males (78%) seemed to be much more likely to engage in physical activities than females (52%) (Supplementary Table 1).
Interestingly, 48% of patients said HAE impacts their ability to live their lives a lot (14% very much and 34% quite a lot) and female participants (54%) are more impacted than males (39%). Just 5% said that disease does not impact their ability to live their life the way they want at all. Nevertheless, the majority (70%) declared feeling that they manage their disease very well (30%) or quite well (40%). However, more UK patients felt that they are managing their HAE better than Spanish patients (80% vs 52%; Supplementary Table 1).