Prostate cancer patients in Nashville and Los Angeles are benefiting from a computer-based decision aid that implements the latest study results to tailor treatment options to an individual’s quality-of-life priorities.
The CEASAR (Comparative Effectiveness Analysis of Surgery and Radiation for Localized Prostate Cancer) study, coordinated by Vanderbilt University Medical Center, is an ongoing multi-site research study conducting long-term follow-up on more than 3,600 men in the U.S. who were diagnosed with localized prostate cancer between 2010 and 2011.
Its evidence on outcomes with radiation, surgery or active surveillance in patients of all ages and ethnicities is being uploaded to a computer-based decision aid in regular use at UCLA, known as WiserCare, through a Patient-Centered Outcomes Research Institute (PCORI) implementation/dissemination grant.
Because the results of the CEASAR study are integrated into the computer-based decision aid, a man with prostate cancer is able to use it to receive personalized predictions about how his quality of life may be affected by any one treatment. The aid couples that information with information from their medical record to help men weigh treatment options with their physicians.
“The really cool thing about this study is the decision aid creates highly personalized estimates of outcomes for patients using the CEASAR data in addition to helping patients think through their personal preferences,” said David Penson, MD, chair of Vanderbilt’s Department of Urology and the Paul V. Hamilton, MD and Virginia E. Howd Professor of Urologic Oncology.
“There are a number of tools out there that guide men through the process, but I don’t think any of them use real data like this one does. To me, this is personalized medicine at its best, and I can’t tell you how excited I am that we are doing this,” Penson said.
Researchers are hoping the model could be extended to patients with breast, brain and lung cancers.
“Cancer patients don’t know how to ask the questions. They are so confused, so they will fake it with a doctor because they don’t want to be ignorant. It is hell on wheels to go through that experience,” said patient advocate Ralph Conwill, a retired engineer who had robotic surgery at VUMC for prostate cancer in 2007.
“When you hear the doctor say that you have cancer, the first thing you think is that you are going to die. Then you get involved in the language of cancer and you don’t speak that language.”
Conwill and his wife volunteer with patients and their families across the country, not to tell them what to do, but to inform them about their choices.
“I am not a doctor and I tell them up front, ‘Don’t ask me what you should do. We are going to figure this out on your grounds and then you go back to your doctor,’” he said.
“The last thing the doctors want to hear the patient say is, ‘Just pretend that I am your dad and tell me what to do.’ The doctors can’t do that because they don’t know what the most important things are to the patient. If you don’t want to lose your sexual function, or bowel function, urinary function — all of these things can go haywire after the therapies for these cancers.”
UCLA School of Medicine Vice Chair of Urology Christopher Saigal MD, MPH, developed the decision-making platform. He has been supported by an R-01 grant from the National Cancer Institute to find ways to measure patient preferences for outcomes of care and has been employing the decision aid at UCLA, among other places.
The original tool provided very generalized estimates of outcomes using data from a single older study. Saigal teamed with Penson, a longtime friend and colleague, to apply for the PCORI implementation/dissemination grant to revise the tool using the CEASAR data so men could get truly personalized estimates of their outcomes.
“Academic surgeons usually aim to make an impact in the field by publishing in high visibility journals, as was done with CEASAR,” Saigal said. “However, many men with prostate cancer can’t access those journals. We hope that the UCLA/Vanderbilt collaboration will ‘unlock’ the power of the data that is out there about prostate cancer treatment outcomes for men to use directly when considering treatment.”
