The reaction of patients to prodromal signs and symptoms
Among surveyed patients, 56% (N=116) felt that early signs/symptoms
provided them with a warning that swelling was coming for most of the
attacks they experienced.
Interestingly, actions taken by patients when prodromes started differ
between countries. While over half of the participants in the UK
declared taking some form of medication (ranging from HAE-specific
treatment like icatibant (32%) to painkillers (4%)), most of the
patients in Spain (65%) often took a ‘watch and wait’ approach to early
signs, or would try to relax/go to bed or take a bath. Of note, 13% of
participants from Spain mentioned that they become anxious or scared in
reaction to the early signs (Figure 2).
The overall majority of patients
(59%, N=122) declared taking medication when they experienced an early
sign/symptom. Of those, 6% stated always taking their medication when
experiencing prodromes, 9% doing this for most attacks, 19% for some
attacks and 25% for a few of the attacks they had experienced (Figure
3).
Looking at the time participants have taken their medication,
36 patients said that they had
typically taken it within 1 hour of first experiencing the early
sign/symptom (with half of these patients doing so immediately) and a
further 40 patients between 1 and 2 hours after the prodromal symptoms
started (Figure 4). It must be noted that these respondents were
predominantly from the UK (N=94 vs. N=28). Overall, male participants
tended to take their medication earlier than female participants (N=11
vs. N=7) with some taking them immediately after an early sign/symptom
started, whilst female participants waited longer, typically taking
their medication between 2 and 6 hours after the start of prodromes
compared to male participants (N=20 vs. N=6; Fig.4). Notably, although
Spanish patients were more reluctant to treat when a prodrome occurred
than UK patients, those who decided to treat took the medication more
quickly than UK participants (53% vs 35% took the medication between
immediately and 2 hours; or 21% vs 13% immediately).
The majority of patients (65% of respondents) said that they had not
always been able to take their medicine before a swelling began. For
this large sub-group (N=127), we then asked whether they thought they
could have avoided or prevented the swelling if they had taken their
medicine when they experienced prodromes. It is interesting to note that
35% agreed that they definitely could have avoided swelling, and a
further 47%, felt that they could possibly have avoided swelling, by
taking the medication at this early point.