1. select-d trial qualitative sub-study
Patient and carer experience of anticoagulation for cancer-associated thrombosis:
select-d trial qualitative sub-study
Ann Hutchinson¹, Sophie Rees², Anthony Maraveyas¹, Annie Young², Kathryn Date¹, and Miriam Johnson¹
¹ University of Hull, ² University of Warwick
Correspondence to: Ann Hutchinson, Hull York Medical School, University of Hull, Cottingham Road, Hull HU6 7RX, UK
SEDA (Supportive Care, Early Diagnosis and Advanced Disease) Research Group
Background
Cancer patients have a 6-7 greater risk of venous thromboembolism (VTE) than the general population. It is the commonest cause of death during chemotherapy. Current recommended treatment for cancer-associated thrombosis (CAT) is six months’ low-molecular-weight heparin (LMWH).
The Anticoagulation Therapy in SELECTeD Cancer Patients at Risk of Recurrence of Venous Thromboembolism (select-d) trial is a randomised, multi-centre pilot study of dalteparin (LMWH) vs rivaroxaban (direct oral anticoagulant [DOAC]) to compare effectiveness at reducing VTE recurrence.
This qualitative sub-study explored patient/carer experience of CAT and its treatment.
Methods
Semi-structured face-to-face or telephone interviews were conducted with a purposive sample of select-d participants; some with a family carer. Two interviewers used a topic guide to explore experience of CAT and anticoagulant use. Interviews were audio-recorded and transcribed. Data were analysed using Framework Analysis and NVivo software.
Results
37 semi-structured qualitative interviews were carried out with patients, nine of which also included carers. Three main themes were found: experience of cancer-associated thrombosis; experience of anticoagulant therapy amongst CAT patients and their carers; and approaching the risk-benefit balance of two different ways of anticoagulant administration.
Some patients were shocked by the CAT diagnosis, but others felt it was relatively insignificant in the context of cancer.
Most patients were unaware of the risk of VTE.
Many saw DOAC (tablets) as easier than injections (LMWH), but most were ambivalent. One preferred injection.
Some carers were happy to help with injections.
There were unwanted effects with LMWH, but in the context of cancer, these were acceptable.
Whilst most were happy to follow medical advice, others weighed preference on the basis of effectiveness.
“I was utterly astounded. I didn’t realise at all how dangerous it was until they told me it was a PE and I thought ‘Wow, my God, it could have killed me’.” P3
“Quite honestly, it was a non-event. Having been through prostate [cancer]…So after that really, on a scale of one to ten, it was about a two. It was shrugged off, virtually.” P24
“No-one had told me that it could happen, or if they had told me they hadn’t said it enough, not so you can remember them saying ‘Well the cancer might cause it’, or ‘the operation might cause it’ or ‘the chemo might cause it’.” P12
“Well I’d probably choose the tablet if I could, but if I was in the same position as I usually am and I can’t swallow tablets I should have to go for the injection.” P22
“I suppose taking a tablet is less problematic. But again the injections didn’t worry me at all.” P32
“It’s difficult; I don’t know what to say sometimes. I suppose when I’m giving the injections perhaps it was a way out for me to think yeah, well at least I’m trying to do something.” Carer for P35
“Obviously you're covered in bruises so you don't look great, but I'm now covered in scars and colostomy bags and that sort of things, it seems a very small price to pay. It becomes a bit relative really.” P21
“If a tablet would serve the same purpose then I would certainly sooner take a tablet, but…if the injections are an advantage then it’s worth putting up with the discomfort.” P11
“I just do as I was bid. I have no medical knowledge at all and I just do as they say.” P28
Conclusions
Patients’ lack of awareness of CAT is concerning. All cancer patients should be informed of this risk and of VTE-related symptoms to enable prompt help-seeking.
Most patients found tablets were more convenient, but injected LMWH was acceptable in the context of cancer and its treatment despite the side effects.
DOACs could provide a welcome choice for patients preferring tablets if they are found to be non-inferior to LMWH. However, injected LMWH is the current recommended treatment for CAT and as patients and carers are prepared to deal with injections, clinicians should follow current clinical guidelines and prescribe accordingly.
Acknowledgements: This study was funded by Bayer