Randy A. Jones, PhD, RN Patricia Hollen, PhD, RN, FAAN Richard Steeves, PhD, RN, FAAN Terran Sims, MSN, RN, ACNP-BC Christopher Thomas, MD University of Virginia School of Nursing

Supported By National Institutes of Health National Cancer Institute R21 grant sponsored by NIH/NCI - 1R21CA University of Virginia Cancer Center Commonwealth Foundation Goodwin Trials Fund Funding Sources

Background on the Issue Prostate cancer is the most commonly diagnosed cancer in men & is the second leading cause of cancer deaths among men in the U.S. Almost all patients with advanced prostate cancer become refractory to hormone treatment. When men develop castration resistant prostate cancer (CRPC), there are factors that affect therapeutic choice. 3

Background on the Issue (cont.) CRPC has relatively a poor prognosis, thus patients with CRPC, their support person, and healthcare provider are faced with complicated decisions. Several decision aids for early stage prostate cancer treatment, but a gap remains – no decision aids available for advanced prostate cancer. 4

Objectives of the Study The broad goal of this program of research is to enhance patient care for prostate cancer by understanding the decision-making process in this population and to promote patient empowerment to make informed choices. The major objective of this feasibility study is to explore testing a decision aid for patients with advanced prostate cancer to help facilitate informed, shared decisions about treatments that affect quality of life, including termination of cancer-directed treatment. 5

Decision Aid Components Balance sheet with pros and cons of the decisions. Clinics’ patient education material related to anticipatory guidance about the disease, treatment and quality of life. CDs that contain information about how to make informed decisions, basic skills on how to communicate, find information, and stand up for your rights. 6

Research Design A pretest/ posttest design was used to measure three decisions over the course of cancer directed treatment for individuals with CRPC. Individual interviews were conducted to better explore the use of the decision aid within patients with CRPC and the decision making process Audiotaped Interview lasted no more than 1.5 hours Field notes taken 7

Sample Patients were recruited from the University of Virginia Cancer Center who met the study inclusion criteria: 1) a diagnosis of castration resistant prostate cancer 2) disease progression despite castration levels of testosterone 3) life expectancy greater than 6 months 4) performance status of KPS % 5) age 18 years or older 6) a support person available to also participate 7) ability to understand English 8

Findings – Demographics (Total) CharacteristicsAdvanced Prostate Cancer (N=22) PatientsSupport Person Age Gender Married School Years Completed Income (<$40,000) 70 (median) 100% men 82% 16 (median) 0-22 (range) 45% 63 (median) 82% women 72% 15 (median) (range) 31% 9

Data Analysis Descriptive Statistics Interviews analyzed using thematic analysis Strips identified, categories identified, and themes forms Recurring themes examined using an iterative approach until saturation 10

Findings: Themes Theme 1: The Decision Aid Helped to Understand Treatment Decisions Theme 2: The Decision Aid Helped the Patient/Support Person to be More Involved in the Treatment Decisions Theme 3: Frequent Contact with the Study Nurse was Invaluable 11

Theme 1: The Decision Aid Helped to Understand Treatment Decisions Decision aid provided more insight into the progression of the disease and the treatment Patients’ support persons said that the decision aid helped them to feel closer to the patient. 12

Theme 2: The Decision Aid helped the patient/support person to be more involved in the treatment decisions Decision making can be an overwhelming process and patients with cancer may not feel comfortable taking the initiative and/or playing an active role in the decision making with their healthcare provider. Both patients and support persons thought that the decision aid helped them be more involved in their treatment. 13

Theme 3: Frequent Contact with the Study Nurse was Valuable Participants enjoyed having the study nurse contact them on a routine basis to follow up on their care, answer any questions they had about the study, and serve as an extra line of support m

Implications Findings from this study may assist healthcare providers to give better and more efficient healthcare in the short term The study has the potential to assist in providing better quality of life among those diagnosed with CRPC 15

Future Research Develop and test a culturally-tailored intervention that includes Community Health Workers as cancer support resources 16

Acknowledgements Patients who participated in the study Dedicated research team 17

Contact Information Randy A. Jones, PhD, RN Associate Professor, RWJF Nurse Faculty Scholar University of Virginia School of Nursing 18