Qualitative experiences, values and decisional needs of patients with unprovoked venous thromboembolism who suffer bleeding – “This pill will keep you alive tonight”

Background Contemporary guidelines recommend extended-duration anticoagulation among patients with a first unprovoked VTE. Little is known about whether this recommendation aligns with patient values after a bleeding complication. Objectives To explore the experiences, values, and decisional needs of patients with unprovoked VTE related to extended-duration treatment after an anticoagulant-associated bleed. Methods In this descriptive, qualitative study, face-to-face online semi-structured interviews were conducted with patients with unprovoked VTE who had experienced bleeding and continued anticoagulant treatment in one academic hospital in Canada. Data were analyzed using directed content analysis to identify themes. Themes were mapped onto the Ottawa Decisional Support Framework to identify decisional needs. Results Between September and December 2021, 14 patients were interviewed (ages 41-69; 9 females). Many patients were not aware of the option to stop anticoagulation and had limited understanding of the decision about treatment duration. Despite the negative quality-of-life impact of clinically relevant bleeding during VTE treatment, the majority continued anticoagulation due to emotional trauma of VTE diagnosis, a perception that bleeding would be more manageable than VTE recurrence, a desire to maintain connection to subspecialty care, or non-VTE related benefits (e.g., cancer diagnosis, protection from COVID-19). Patients’ decisional needs included lack of choice awareness, inadequate support for participation, lack of personalized risk stratification, and inadequate information on monitoring and managing heavy menstrual bleeding. Conclusion Despite the impact of anticoagulant-associated bleeding on quality-of-life, patients preferred continuing with anticoagulation for reasons extending beyond secondary VTE prevention. Effective decision support interventions are needed to address unmet decisional needs.