Unfortunately for the majority of men who present with advanced or metastatic prostate cancer, despite an initial response to hormone therapy, their disease progresses to castrate resistant prostate cancer (CRPC). Men with metastatic CRPC (mCRPC) report significantly poorer quality of life (QoL) than other groups of men with prostate cancer. They experience fatigue, pain, and decreased physical activity.
In this study we are looking at how men and their families decide on treatments, how they source information to make these decisions and how much health care professionals (HCPs) engage in a shared decision making process. We want to find out if the treatment information provided by HCPs matches that received by the patients. We also want to measure the impact of systemic treatments on the quality of life for men with mCRPC and their families.
We re exploring this by examining the quality of life and information needs of 130 men with mCRPC considered suitable for treatment. We are measuring these aspects of their life using validated measures captured three times in a 6 month period. Additionally, we have conducted interviews with 33/130 men and when possible interviewed their partners for perspectives on information provision, treatments and side effects of any treatments. The interviews took place twice (within two weeks of joining the study and again at 3 months).
In parallel we conducted an online survey with UK clinicians, nurses and other health care professionals to explore their views about treatments, side effects and decision making in men with mCRPC.
The study data will be analysed to provide important information to share with patients, prostate charity groups and health care professionals. It will highlight the experiences of treatment decisions, what sorts of information helped with decision making and how the perceived benefits and harms of treatment affect patients’ and families’ lives. Also the results will be useful for preparation of written materials and/or to contribute to communication skills training programmes for prostate cancer health professionals and potentially to policy makers when determining the harms and benefits, not just economic “costs” of different treatment options.