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).