Access to treatment and management of HAE
68% of HAE patients had seen an HAE- HCP specialist within the last 5 months prior to the survey (59% in the UK, 82% in Spain). The vast majority of participants (91%) had their last HAE attack within the previous 12 months and almost a third of participants categorized their last HAE attack as severe (Supplementary Table 1).
The most commonly prescribed treatments were C1-INH (Berinert®, CSL Behring, Cinryze®, Takeda and Ruconest®, Pharming) and icatibant (Firazyr®, Takeda), with 75% and 65% of participants receiving them respectively. Over half of HAE patients were prescribed more than one type of treatment. 18% of participants were using danazol (mostly males). Details of all the treatments prescribed are available in Supplementary Figure 1.
The majority of HAE patients (78%) administered the medication themselves (86% UK, 65% Spain). 13% of patients have their medication administered by an HCP; this happened more often in Spain (25%) than in the UK (6%). Moreover, there were striking differences in the means of obtaining prescriptions between the two countries. Among the UK participants, 73% have their medication delivered to them compared to 46% of patients in Spain, whilst only 17% of patients in the UK collected it from their medical centre compared to the majority of patients (65%) in Spain.
Overall, 79% of surveyed patients felt their needs were well understood by HCPs and they had high levels of satisfaction with the medical treatment and advice they had been given (87% and 92%, respectively).