Building expertise amidst an uncertain trajectory: a qualitative study of patients' perspectives on shared decision-making for aortic stenosis in Canada

Abstract Purpose In Canada, patients' perspectives are inconsistently incorporated into treatment decisions for severe aortic stenosis (AS). Although shared decision-making (SDM) is recommended in clinical guidelines, a significant gap remains in supporting patients to be engaged in decisions about aortic valve replacement (AVR). We aimed to explore patients’ perspectives on AS and the factors influencing their engagement in SDM when facing AVR. Methods We conducted a qualitative study using an interpretive description approach. We conducted semi-structured interviews with patients across Canada who have faced or are facing AVR treatment decisions. We undertook a theory-guided approach to data collection, and constant comparative analysis between transcripts. Results We conducted twenty interviews with 7 men and 13 women. Preliminary reflective analysis suggested four interconnected categories that describe how patients with AS engage in AVR treatment decisions. First, participants described a long period of uncertainty between diagnosis and preceding treatment marked by monitoring, waiting, and ambiguity that could last months or years. This uncertainty often shifted abruptly when an urgent event occurred or symptoms progressed, making AVR necessary. At this point, participants described entering a more structured and easier to navigate AS interventional care pathway where decision-making was largely driven by physicians’ recommendations based on clinical guidelines, limiting opportunities for SDM. Second, within this trajectory, participants positioned themselves as experts in their own care. They described actively building knowledge and self-advocacy through independent research, connecting with patient organizations for reliable information and peer support to prepare for discussions with their HCP. Despite these efforts, options related to the type of AVR were often not presented. Participants undergoing surgery reported SDM regarding valve type. Third, engagement was shaped by siloed care and limited coordination between clinicians. These challenges were even greater for people living in rural and remote areas, where geographic distance made coordinated, specialist care harder to access. Finally, gender dynamics impacted experiences. Women described how gender - a social construct - shaped power dynamics within clinical encounters. This affected how their symptoms were perceived, how information was exchanged, and the extent to which they felt heard and believed. Conclusions Our findings illustrate how patient engagement in SDM for AS treatment decisions is not static and does not occur within one encounter. Patient engagement emerges at the intersection of a lengthy illness trajectory, built expertise, health system structures, and gender as a social construct. Tailored interventions are required to support patient involvement in AS decisions, especially in this constant and rapid evolution of AS treatment options.