Prostate Cancer Advisory Board Minutes
PCORI Prostate Cancer Advisory Board Meeting
Wednesday, May 17, 2016
Participants: Bal Carter, Yates Coley, Wei Guo, Peter Johnson, Tricia Landis, William Lewis, Mufaddal Mamawala, Risha Zuckerman
Welcome and Introductions
Dr. Yates Coley and Ms. Risha Zuckerman welcomed everyone. The participants introduced themselves and shared their role in the project.
Overview of Risk Prediction Model
Dr. Coley provided a review of the individualized risk prediction decision support tool. Currently they are designing and testing the user interface to see if it does what they want it to do and learn how it can be improved.
Reflection from February 2016 Meeting
Patient stakeholder Dr. William Lewis stated that if there is a higher percentage chance that the Gleason score is higher than a 6, then he believes that information should be shared with patients at the initial decision point as well as information on the probability of cure. Dr. Bal Carter, Mr. Mufaddal Mamawala and Dr. Coley shared explained that this is not necessarily the case overall. The overall message was to share additional information in an effort to reduce anxiety so the patient feels they have all of the information they need to make the decision to begin active surveillance or start treatment.
Prediction Tool in the Clinic
Dr. Coley shared plans for how the prediction tool will be used in the clinic, specifically, who the printout will go to and what it will contain. Patient stakeholder Mr. Peter Johnson questioned if the predictions are age dependent and could the numbers change based on age. While life expectancy changes minimally over time in relation to one’s diagnosis, it can be added to the tool to provide additional information to patients.
Patient Surveys to be used in the Clinic
Dr. Coley introduced the plan to do a trial of the tool with patients in the clinic. Patients will be randomized into two groups; the first will have a standard conversation with their clinician and the second will have a conversation that includes information from the prediction tool. All of the participants will receive pre- and post-visit surveys measuring anxiety and whether they were influenced by the decision support tool.
Upon conclusion of the meeting, Dr. Coley asked Mr. Johnson and Dr. Lewis to email her with any comments, concerns, or questions. Dr. Lewis reciprocated the request - if there are any questions she or the research team would like to ask of him, please contact him between meetings. Dr. Coley will send drafts, mock ups, and survey question prior to the next meeting so there is more time for review.