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

Abstract

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. AbstractIntroduction: 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-bycase 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. K E Y W O R D S cancer-associated thrombosis, cultural, patient experience, qualitative, venous thromboembolism | 155 NOBLE Et aL.

Primary Thromboprophylaxis in Ambulatory Cancer Patients: Where Do We Stand?

“…Several small qualitative studies have been performed to assess patients' experience with cancer-associated VTE [10,11,38]. Seaman and colleagues interviewed fourteen patients with different types and stages of cancer who were previously diagnosed with pulmonary embolism or deep-vein thrombosis [10].…”

A mixed‐methods study to evaluate a patient‐designed tool to reduce harm from cancer‐associated thrombosis: The EMPOWER study

“…For example, qualitative data suggest a greater desire for information from UK, Spanish, and Canadian patients, compared with those from France, Singapore, and New Zealand. 14–16,21,22 . Nevertheless, patient education delivered through the medium of an information video appears to be acceptable to patients and staff and is a straightforward and inexpensive way of informing those who choose to engage with it.…”

“…Systemic anticancer therapies, which include cytotoxic chemotherapy, immunotherapy, monoclonal antibodies, and hormonal agents, are arguably one of the most significant risk factors for CAT and have been associated with up to 84% of cases 2 . CAT is a cause of significant mortality and morbidity; it is the most common cause of chemotherapy‐related death, as well as being associated with long‐term physical and psychological sequelae 3–5 . Recent clinical guidelines have recognized the importance of identifying patients receiving ambulant systemic anticancer therapy at risk of CAT who should be considered for primary thromboprophylaxis.…”

“…Previous qualitative data suggest that patients embarking on systemic anticancer therapy receive little information regarding the risks of CAT or red flag symptoms that would warrant urgent medical attention 4 . Consequently, many cases of CAT have a delayed presentation, with an increased risk of fatal PE, extensive DVT, postthrombotic syndrome, and long‐term psychological distress 14‐16 …”

“…2 CAT is a cause of significant mortality and morbidity; it is the most common cause of chemotherapy-related death, as well as being associated with long-term physical and psychological sequelae. [3][4][5] Recent clinical guidelines have recognized the importance of identifying patients receiving ambulant systemic anticancer therapy at risk of CAT who should be considered for primary thromboprophylaxis. This may be through targeting particular cancer types (eg, pancreatic cancer or myeloma) or through the use of a validated risk assessment tool, such as the Khorana score.…”