Cancer patients’ experiences of living with venous thromboembolism: A systematic review and qualitative thematic synthesis

BACKGROUND: Cancer-associated thrombosis is common. Recommended treatment is daily injected low-molecular-weight heparin for 6 months. Most studies focus on prophylaxis and treatment; few have explored the patients' experience. AIMS: To identify and synthesise the available literature concerning patients' experience of cancer-associated thrombosis. DESIGN: Systematic literature review and qualitative thematic synthesis. DATA SOURCE: MEDLINE, Embase, CINAHL, PsycINFO (until 10/2016; limited to English) were searched. Eligible papers were qualitative studies of adult patients' experience of cancer-associated thrombosis. Two researchers screened titles/abstracts/papers against inclusion criteria with recourse to a third for disagreements. Critical Appraisal Skills Programme qualitative checklist tool was used for quality appraisal. RESULTS: A total of 1397 articles were identified. Five qualitative studies (total n = 92; age range 32-84 years) met the inclusion criteria. Participants had various cancer types. Most had advanced disease and were receiving palliative care. Four major themes emerged from the data: knowledge deficit (patients and clinicians), effects of cancer-associated thrombosis (physical and psychological), effects of anticoagulation and coping strategies. CONCLUSION: The cancer journey is difficult in itself, but thrombosis was an additional, frightening and unexpected burden. Although the association between cancer and thromboembolism is well-known, cancer patients are not routinely educated about the risk or warning symptoms/signs of thromboembolism which may otherwise be misattributed to the cancer by patient and clinician alike. This systematic review highlights the impact of cancer-associated thrombosis on the lives of cancer patients, and calls for education for patients and clinicians to be part of routine care and further work to address this patient priority.