(TCP001) ANTICOAGULANT THERAPY AND BLEEDING: THE PATIENT PERSPECTIVE

Background: There is limited information available regarding patient and caregiver awareness and perspectives about anticoagulant-related bleeding, the main complication of anticoagulation. The objective of this survey was to assess knowledge experiences, and concerns regarding anticoagulation and bleeding of individuals receiving anticoagulation and/or their caregivers.

METHODS AND RESULTS: We conducted an anonymous online survey of Canadian adults receiving anticoagulation and/or their caregivers. The survey included multiple-choice questions co-developed by a multidisciplinary team of experts and persons with lived experience. The survey was hosted and distributed online by Environics Research, in both English and French and advertised through online platforms of Thrombosis Canada. Survey responses were gathered from December 12, 2022 to February 6, 2023.
Overall, 305 individuals responded to the survey (57% female), of whom two-thirds answered on their own behalf while one-third answered as a caregiver. Most respondents (84%) were between 18 and 64 years of age and were taking an anticoagulant for venous thromboembolism (53%), atrial fibrillation (36%) or mechanical heart valve (21%). Respondents were currently taking or had been treated with one or more anticoagulant(s) with 60% on a direct oral anticoagulant (DOAC), 50% on a low molecular weight heparin (LMWH) and 26% on a vitamin K antagonist.
Respondents reported being comfortable being on an anticoagulant (81%). When first prescribed an anticoagulant, only 49% of respondents indicated that they were informed about potential side effects and 84% indicated that it was important to know about the side effects. Almost one quarter (23%) of respondents indicated that they had experienced major (serious) bleeding while taking an anticoagulant and of those, 15% never restarted their anticoagulant. Almost half (47%) experienced minor bleeding while on an anticoagulant. The majority (87%) of respondents indicated that it was important or very important that they know about bleeding that can occur while on an anticoagulant. Although respondents were generally comfortable taking anticoagulation, most (75%) indicated that they would feel more comfortable if they knew a reversal agent could be used for major bleeding which was a concern for almost half of respondents (44%).

Conclusion: We found that although individuals receiving anticoagulants and/or their caregivers are generally comfortable taking anticoagulants, there are information gaps regarding bleeding complications that they consider important. Future research to enhance communication about the potential harms of anticoagulation with patients and caregivers is warranted.