Patient Experience of Living With Cancer‐Associated Thrombosis in Canada (PELICANADA)

Abstract

Abstract Introduction Previous research from the United Kingdom and Spain has identified several areas of unmet clinical and support need for cancer patients diagnosed with venous thromboembolism. It is not known whether such experiences are restricted to those countries health care systems and culture. We therefore evaluated patients’ experience of cancer‐associated thrombosis (CAT) within a Canadian setting. Methods Purposive sampling of patients with CAT attending a regional thrombosis clinic in Vancouver was undertaken. Semistructured interviews were audio recorded, transcribed, and coded using NVivo software. A deductive approach was taken by applying the framework matrix from the original study to these data on a case‐by‐case basis. Results Twenty patients (10 male, 10 female) aged 39 to 74 (mean, 63) representing a breadth of different cancers participated. Commonalities between the UK and Canadian patients included the traumatic nature of experiencing CAT, the need for information, and adaptive behaviors through ritualization. Two new themes were identified: (1) Patients with incidental pulmonary emboli (iPE) were usually telephoned about their thrombus with little support and suboptimal communication; and (2) cost implications of accessing low‐molecular‐weight heparin varied according to insurance cover. Patients were sometimes converted to warfarin for financial reasons. Conclusion The distress associated with CAT is a common experience across different populations but may be ameliorated by early access to specialist services, information, and support. The current process for managing iPE could be improved with better communication and a dedicated clinical pathway. Funding issues may influence choice of anticoagulant.

Keywords

• cancer‐associated thrombosis
• cultural
• patient experience
• qualitative
• venous thromboembolism