Communicating prostate cancer outcomes data to consumers A brief communication.

ABSTRACT

OBJECTIVE: To translate and communicate outcomes data for prostate cancer from a clinical registry data into a consumer-friendly resource. METHODS: First, we analyzed real-world data from the South Australian Prostate Cancer Clinical Outcomes Collaborative (SA-PCCOC) registry for men diagnosed from 2008 to 2018 including clinical and functional outcomes following surgery, external beam radiotherapy, brachytherapy, hormone therapy, active surveillance and watchful waiting. These outcomes included overall survival, cancer specific survival, biochemical recurrence, decline in functional outcomes, and transition to active treatment following active surveillance. Second, we translated outcomes into a summary text and pictographic format and present in one document that consumers found easy to understand and interpret. This "Prostate Cancer Outcomes Report Card" was developed in consultation with a consumer advisory group and further improved through exploratory interviews with people affected by prostate cancer, an online survey among the general public, and clinician feedback. RESULTS: The 5-year prostate cancer-specific survival rate was 97%. There is a reasonably high chance of cancer returning within 5 years (17% after surgery and 14% after radiotherapy) while 1 in 3 men on active surveillance transitioned to other treatments within 5 years. Sexual function was negatively affected following all treatment types. Men with higher risk disease had a worse prognosis, a higher chance of recurrence and greater decline in physical function. Consumers required trustworthy, comprehensive, simple and up-to-date information collated in one place, and valued having access to this resource. Data on high survival rates were considered reassuring. There were high levels of unmet psychosocial and supportive care needs, especially in relation to mental health and sexual function. The report card was well received by patients and health care workers. CONCLUSIONS: This relatively simple and easily understandable consumer-oriented outcome report serves to better inform men with prostate cancer and facilitate patient-provider communication and shared decision-making.