Patients Experience of Living with Cancer Associated Thrombosis in France (LE PELICAN)

Introduction

Previous research from the Europe and Canada has identified several areas of unmet clinical and support need for cancer patients diagnosed with venous thromboembolism (VTE). It is not known whether such experiences are restricted to those particular countries healthcare systems and/ or cultures. We sought to evaluate patients' experience of cancer-associated thrombosis (CAT) within France.

Methods

Purposive sampling of twenty three patients with CAT were recruited from a thrombosis service in a general hospital in Colombes, France, Semi structured interviews were audio recorded and transcribed. Transcripts were coded using Invivo software. Analysis was undertaken using an applied framework matrix with an inductive approach to identify any new themes. This was in order to explicate potential cultural and operational differences that were not apparent in the previous datasets.

Results

Twenty three patients (11 male, 13 female) aged 51-83 (mean 69) participated. The main commonality observed between French patients and those interviewed in the United Kingdom, Spain and Canada was the lack of information regarding the risks of CAT or signs and symptoms, which would necessitate medical attention. In addition patients reported a similar lack of verbal and written information regarding treatment choices and how to administer low molecular weight heparin (LMWH). However, French patients were not concerned by this since they perceived the doctor knew best and did not see information giving as a necessary aspect of their healthcare. They adopted a passive unquestioning role whereby the doctor was always right.

This lack of desire to understand about their condition and in particular CAT, resulted in two major themes which are , thus far, have only been observed in this cohort of patients.

1. Lack of understanding and desire to know about CAT meant that patients knew less about their condition than other patients. Whereas patients from other countries were significantly distressed by knowing the potentially fatal nature of CAT, French patients were not distressed by their diagnosis, its implications on their cancer journey or the future.

2. Patients did not appreciate the utility of shared decision making and relied on the doctor to decide on the drug of choice. They did not wish to understand the rationale for this and thereby did not view the LMWH as a necessary inconvenience. Consequently they were very resistant to LMWH.

Conclusion

The dynamics of the doctor patient relationship in French patients differed from other countries, with patients adopting a passive role with respect to information requirements and their role in shared decision making. This dynamic appears to be a "two edged sword" whereby distress around CAT was minimal, in contrast to all other countries interviewed, yet a lack of knowledge impacted on acceptability of LMWH patient groups. This data has implications for the choice of anticoagulant in the treatment of CAT, particularly now that several DOACS have been evaluated for this indication.