This study investigated how patients experience and which outcomes matter to patients and healthcare professionals in the decision to initiate proprotein convertase subtilisin/kexin type 9 inhibitors (PCSK9i) as add-on lipid-lowering treatment (LLT). We performed a mixed methods study: very high-risk patients qualifying for PCSK9i reimbursement were interviewed about their experiences and preferences. Subsequently, patients using PCSK9i completed an anonymous online survey about their experiences. Additionally, healthcare professionals (HCPs) filled in an online survey about their PCSK9i prescription preferences and perceived patient preferences. We interviewed 25 patients (median [IQR] age 58 [48-65] years, 56% women, 64% established cardiovascular disease) at different decision-making stages. The majority (72%) chose efficacy over side-effects (16%) and ease of use (12%) as most important attribute of add-on LLT. Most patients (72%) prefer shared decision-making. Subsequently, 170 patients using PCSK9i completed a survey (age 64 [56-69], 44% women, 63% established cardiovascular disease). Here again, the most important attribute (83%) in deciding on add-on LLT was efficacy. Almost all (90%) patients favoured shared decision-making. Of the 59 HCPs (age 44 [40-50], 49% women, 78% medical specialist), only 27% indicated to consider patient preferences when selecting the PCSK9i type. HCPs identified patient characteristics influencing their PCSK9i prescription preferences. For patients and HCPs, efficacy was the most important aspect in choosing a PCSK9i. Even though shared decision-making is recommended by the guidelines and preferred by patients, in clinical practice only a minority of the HCPs apply this. To facilitate shared decision-making, future research should investigate the development and impact of a decision aid for patients.
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