Perceived experiences of people with severe haemophilia A switching from factor VIII prophylaxis to emicizumab

Abstract Introduction Emicizumab is a humanised, bispecific monoclonal antibody that bridges activated factor (F) IX and FX; it is approved for treatment of people with haemophilia A (PwHA) of all ages, with or without FVIII inhibitors. Qualitative experiences of PwHA switching to non-factor treatments, such as emicizumab, are needed to facilitate shared decision-making (SDM). Aim This study aimed to describe experiences of switching from FVIII prophylaxis to emicizumab among PwHA. Methods Participants with severe haemophilia A without FVIII inhibitors from the Swedish cohort of the HemiNorth 2 study (MO42245; EudraCT# 2020-003256-32) were subject to qualitative interviews in 2023, which were analysed through content analysis. Results Overall, nine participants were interviewed. The analysis revealed three categories: ‘Adapting to a new reality’, ‘A feeling of normality’ and ‘Shattered expectations’. Participants reported that switching from FVIII prophylaxis to emicizumab fostered a feeling of normality, with the disease taking less time and space in their daily lives. The participants also described increased confidence in physical activity, and a newfound hope for the future treatment of haemophilia. However, not all expectations were met, as the disease persisted and still affected daily life. Some participants also reported a lack of information about emicizumab from a patient perspective. Conclusion The findings convey a sense of normality among PwHA switching to emicizumab, stemming from a reduced disease and treatment burden. The results highlight the gaps in knowledge among PwHA, which can help inform SDM practice and manage expectations when switching to a non-factor treatment.