Background:
Prostate cancer is a major public health concern, with long-term survivors experiencing ongoing physical and psychological symptoms associated with the disease and treatment. Improving the survivorship experience is fundamental to enhancing the quality of care received by patients. A key gap in survivorship research has been the area of supporting men with prostate cancer who enrol and participate in a clinical trial. Clinical trials are essential for the advancement of cancer treatments however, patient participation is insufficient. It was estimated that the unique nature of clinical trial enrolment among men with advanced prostate cancer evokes comparably unique needs additional to those already experienced by these men.
Aim:
The overall aim of this doctoral program of research was to identify the needs of men with advanced prostate cancer who enrol in a clinical trial and ways to best support them.
Methods:
In order to achieve the above aim, this research encompassed two distinct phases: a systematic review (Study 1) and a prospective longitudinal study nested within the TheraP clinical trial (Study 2 & 3). All studies utilised a qualitative research design.
Conclusion:
Findings were established demonstrating that the decision-making experience is consumed by feelings of trepidation, leaving treatment to chance, sensing no other alternative and needing to justify the decision to enrol. Results further highlight the need for tailored trial information, social validation, improved support and endorsement from health professionals. There is a need for targeted psychological and supportive care that includes consideration of the unique aspects of the experience of having both advanced disease and being in a trial. This research synthesised participant experience across the trial continuum. Importantly, a Pathway for Clinical Trial Support (PaCTS) framework was created that provides recommendations for developing and implementing a supportive care pathway for trial participation.