Abstract
Background: The occurrence of prodromes has been associated
with swelling in hereditary angioedema (HAE). The aim of the study was
to analyse the frequency of prodromal signs, the level of awareness
among HAE patients and to understand the actions taken by patients when
they experienced them.
Methods: An online survey to assess patient experiences of
prodromal symptoms was conducted among 208 HAE patients from the UK and
Spain.
Results: 60% of HAE patients who experience prodromes can
always or usually predict an impending swelling. Almost 40% of
participants noticed prodromes within the 2 hours preceding an HAE
attack. Tiredness/fatigue (64%), pressure or tightness in the skin
(53%) and abdominal pressure (52%) were the most reported early
symptoms. C1-esterase inhibitor (C1-INH) and icatibant were prescribed
to 75% and 65% of participants, respectively. 56% of participants in
the UK reported self-medicating at the time of prodrome, whereas 65% of
patients in Spain preferred to wait or relax when early symptoms began.
30% of patients said they usually took their medication within 1 hour
of experiencing the prodrome. The percentage of patients who needed only
one injection to treat the attack increased when patients took their
medication early in the prodrome (from 55 to 66%).
Conclusions: The majority of patients who have early symptoms
were usually or always able to predict that a swelling would occur.
Early treatment of HAE attacks is associated with less medication usage,
but there is still no common understanding of what ’early treatment’
means.