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.