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With Southampton University and the Peter MacCallum Cancer Centre in Australia we have been carrying out various studies over recent years to try and understand the experiences of CUP patients and their families. The latest study, in progress, is to compare CUP patients with patients who have site-specific metastatic cancers (colorectal, breast, head and neck, kidney/adrenal, prostate, pancreas, and upper and lower gastrointestinal). The data source for this study is the national Cancer Patient Experience Survey (CPES) which is an England-wide programme of research about cancer patients’ experiences of care while undergoing inpatient or day-case treatment.
There is a clear finding that in comparison with site-specific cancers, CUP patients understand less the explanations of their condition, and would like more written information.
Providing accurate and helpful information and preparing patients with CUP for their treatment trajectory is especially difficult – we know well from empirical and anecdotal data that confusion and anxiety are amplified for the CUP patient because of the uncertainty surrounding the disease.
The booklet Understanding CUP, which Jo’s friends initiated with CancerBackup many years ago, is now in its 4th edition (Sep 2016) as a Macmillan Cancer Support publication. It is a valuable aid but more is needed. The patient experience research findings show that patients with CUP experience uncertainty regarding their diagnosis and are less prepared for what to expect regarding diagnostic investigations.
To meet this need we are funding, and contributing to, the development of a Patient Decision Aid (PDA) specifically for patients who have CUP. The purpose of the PDA is to help patients to understand their disease and to make informed choices between therapeutic options and supportive care. The research is being led by Dr Paul Perkins, Consultant in Palliative Medicine and Dr David Farrugia, Consultant Medical Oncologist (who practice at Gloucestershire Hospitals and Sue Ryder Cheltenham). Work started on this last year and it is hoped that the PDA, co-branded with Sue Ryder, will be available by the Autumn of 2017.