Patients experience of living with cancer associated thrombosis in France (Le PELICAN)

Abstract

Introduction: Previous research in the United Kingdom and Spain has identified several areas of unmet clinical and support need for cancer patients diagnosed with cancer associated thrombosis (CAT). These included lack of information, which was directly associated with distress. Appropriate information has been shown to improve tolerance and compliance with self-injecting low molecular weight heparin (LMWH). It is not known whether such experiences are restricted to those particular countries healthcare systems and/or cultures.

Methods: Purposive sampling of patients with CAT were recruited from an academic hospital in Colombes, France. Semi structured interviews were audio recorded and transcribed. Transcripts were coded using Invivo software. Analysis was undertaken using framework analysis.

Results: Twenty four patients participated. Three major themes with associated subthemes were identified: Patients received minimal information regarding risks of CAT or how to treat it once diagnosed. However, this was not associated with distress. Patients adopted a passive role whereby the doctor was always right. They were intolerant injections and found it inconvenient to await community nurses.

Conclusion: The doctor patient relationship in France differs from other countries, with patients adopting a passive role with respect to information requirements. This dynamic appears to be a "two edged sword" whereby distress around CAT was minimal yet a lack of knowledge impacted on acceptability of LMWH. This has implications for the choice of anticoagulant particularly now that the DOACS have been evaluated for this indication.

Keywords: Cancer associated thrombosis; Cultural; Patient experience; Qualitative; Venous thromboembolism.