Nihal Mohamed, Ph.D. Michael A. Diefenbach, Ph.D. Mount Sinai School of Medicine Department of Urology & Oncological Sciences, New York

Differences between African American and white men in worries and expectations about prostate cancer treatment, need for information, and decisional regret Nihal Mohamed, Ph.D. Michael A. Diefenbach, Ph.D. Mount Sinai School of Medicine Department of Urology & Oncological Sciences, New York

Overview Health disparity in prostate cancer & treatment Decisional difficulties & regret Fear of recurrence (FoR) Depressive symptoms Relationship between decisional difficulties, depressive symptoms, FoR, and regret among African American and white patients

Prostate Cancer 2008 Pr Ca is the most common cancer effecting men in US & Canada Incidence: 186,320 in US Mortality: 28,660 in US Prostate 25% Lung & bronchus 31% Lung & bronchus 15% Prostate 10% Colon & rectum 10% Colon & rectum 8% Urinary bladder 7% Pancreas 6% Melanoma of skin 5% Leukemia 4% Non-Hodgk lymphoma 5% 4% Kidney 3% Liver & intrahepatic bile duct Oral Cavity 3% Esophagus 4% Leukemia 3% Non-Hodgkin lymphoma 3% Pancreas 2% Urinary bladder 3% Kidney 3% All Other Sites 18% All other sites 21% ACS. Cancer Facts & Figures 2008; FACT SHEET: CANADIAN CANCER STATISTICS 2008 - CANCER TRENDS ACROSS CANADA & IN BRITISH COLUMBIA

Treatment Options of Early stage Prostate Cancer Surgery: Open surgery Laparoscopic Robotic surgery Radiation Therapy: External Beam Radiation therapy Brachytherapy (i.e., Seed Implant) CyberKnife radiosurgery (i.e. Image-guided robotic radiosurgery system) Expectant Management (i.e., Watchful Waiting)?

Consequences of Treatment Choice Impaired QOL Sexual Dysfunction Urinary Dysfunction Bowel Dysfunction (Eton & Lepore, 2002; Diefenbach & Mohamed, 2007, 2008)

Why prostate cancer treatment decision is so difficult???? Lack of a standard care Contradictions in physicians advices Imperfect data from various studies on QOL (Eton & Lepore, 2002; Diefenbach & Mohamed, 2007)

Why prostate cancer treatment decision is so difficult? Trust in the H. C.system Medical Insurance SES Balancing potential benefits of a treatment with the likelihood of impaired QOL & health care burden

Health Disparities Health Disparities: Are differences in the incidence, prevalence, mortality and burden of disease and other adverse conditions that exist among specific populations groups in the US. (NIH, 2005) Occur when members of certain population groups do not enjoy the same health status as other groups. Disparities are often identified along racial and ethnic lines-show, [but] also extend beyond race and ethnicity. (NCI, 2005)

Health Disparity in Prostate Cancer & treatment African American men: do have the highest incidence rate for prostate cancer in the US are more likely to die of the disease are less likely to undergo radical prostatectomy are more likely to opt for WW than white men. NCI (2007). Cancer Health Disparities: Questions and Answers. On-line publication. http://www.cancer.gov/cancertopics/factsheet/cancer-health-disparities#r2

Health Disparity in Prostate Cancer & treatment NCI (2007). Cancer Health Disparities: Questions and Answers. On-line publication. http://www.cancer.gov/cancertopics/factsheet/cancer-health-disparities#r2

Cognitive factors affecting prostate cancer treatment decision (Diefenbach & Butz, 2003, Diefenbach & Mohamed, 2007, Diefenbach et al, 2008)

Study Questions Differences between blacks & whites in: Prostate cancer treatment Beliefs & expectations about treatment Decisional conflict and role preferences Differences between blacks & whites in: Decision-related outcomes (decisional regret, worries about recurrence, and depressive symptoms) Explore Patterns of associations among study outcomes, and Differences between blacks & whites in patters of associations among study outcomes

Study Outline & Referral Sources Physician referral Participant contacted Agree/Decline Participation Baseline Questionnaire 6 months Questionnaire 12 months Questionnaire 18 months Questionnaire 24 months Questionnaire 36 months Questionnaire. Reading St. Mary s North Penn. Pinnacle FCCC Paoli. Jeanes. Co. Delaware.

Participants Black White t test /Chi-square p N Age (M±SD) 76 60.96 ± 8.48 92 64.96 ± 7.28 3.28.001 Marital status: married not married 68.4% 31.6% 84.4% 15.2% 6.37.01 <= high school >= College 78.9% 21.1% 78.3% 21.7%.01.95 Employment: employed Not employed 51.3% 48.7% 40.2% 59.8%.15.10 Number of DRE s (M±SD) Number of PSA(M±SD) Gleason Score (M±SD) 1.67 ± 2.30 9.89 ± 11.84 6.16 ±.87 1.31 ± 1.21 7.86 ± 7.82 6.2 3±.88-1.03-1.27.50.31.20.61 Education:

Comprehensive Assessments Clinical Variables: Demographics, Medical History Sexual/Urinary Problems Information Sources Treatment Related Psychological Variables: Worry About Treatment Side Effects Distress and Worry about Treatment Decision and Regret Worries about Recurrence Control Preference Scale Treatment Variables: Treatment Questions (Effectiveness) Use of Second Opinions and Recommendations General Psychological Variables: Perceived Vulnerability Affect Scales (i.e., CES-D, RIES) Decisional regret (Brehaut, 2003) Coping (i.e.,mbss) Reasons for Choosing Treatment Quality of Life (i.e., FACT-P)

Treatment Related Psychological Variables & Measures Decisional Conflict: Decisional difficulty Need of time Need of information Decisional regret (Brehout & O Conner, 2003) Decision role preferences Control Preferences Scale (Degner et al, 1997) Surgery- and radiation-related beliefs (ad-hoc) Perceived risk and severity of disease (ad-hoc) Worries about cancer recurrence (ad-hoc) Depression scale (CESD; Radloff, 1977)

Differences between blacks and whites in prostate cancer treatment % Chi-square =.02, p =.99

Differences between blacks and whites in prostate cancer related beliefs at baseline Very much Mean * ** Not al all ** p <.01, * p <.05.

Differences between blacks and whites treatment-related beliefs at baseline Mean Very much * ** Not al all ** p <.01, * p <.05.

Differences between blacks and whites in treatment-related beliefs at baseline Very much Mean *** *** Not al all *** p <.001.

Differences between blacks and whites Decision-related beliefs at baseline & 6M Very much Baseline 6 Months Mean * * Not al all * p <.05.

Differences between blacks and whites in decision role preferences at baseline % Chi-square = 12.85, p <.01.

A. Summary No differences in treatments received by race. Compared to white men, black men: felt less informed about prostate cancer; have stronger beliefs about the severity of the disease; were more worried about surgery causing pain and not curing cancer; were more worried about radiation causing pain and a new cancer; and were more likely to prefer an active role in treatment decision making.

Results: Decisional regret among blacks and whites at 6M Very much * Not al all * p <.05.

Differences between blacks and whites in decisional regret by treatment at 6M Mean Very much Not al all All P <.10

Mean Differences between blacks and whites in worries about recurrence by treatment at 6M Very much Not al all F treatment (2, 148) = 4.65, p <.05, Eta-square =.06

Results: Depressive symptoms at baseline & 6M % Chi-square =.44, p >.50 Cliff A M, Macdonagh,R.P. Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJUI 68: 834 83

Correlations among cognitive predictors and decision-related outcomes in all patients regardless of race Regret 6M Worries about recurrence 6M Depressive Symptoms 6M Informed about Pr Ca.063.035 -.117 Severity of Pr Ca.035.337***.169* Difficulty of decision.109.259***.205* Need of more time.217**.160*.189* Need of more INFO.393***.050.080 *** p <.001, ** p <.01, * p <.05.

Differences among blacks & whites in Patterns of associations between decisional conflict and decision-related outcomes Decisional Conflict Beliefs & expectation

Associations between study outcomes among black patients.05.15 depressive symptom. severity E3.06.07.14 difficulty.14.02.30.30 regret E1.41.27 need of INFO.31.54.11.05.18.54.16 need of time X2 (N =186, df = 12) =6.4, p =.89; NFI =.95, RMSEA =.01 worry E2

Associations between study outcomes among white patients.11.18 depressive symptom. severity E3.20.26.06 difficulty.10.03.00.33 regret E1.28.12 need of INFO.06.03.11 -.05.07.35.15 need of time worry X2 (N =186, df = 12) =6.4, p =.89; NFI =.95, RMSEA =.01 E2

B. Summary Compared to white men, black men: were more likely to feel regretful about prostate cancer treatment decision. No differences in worries about recurrence and depressive symptoms by race. Among blacks & whites; higher perceived severity of disease was significantly associated with more frequent worries about recurrence. Among blacks; need of time to think about Pr Ca treatment options was significantly associated with stronger feelings of decisional regret.

Future Directions Need to: increase prostate cancer literacy of African American men wider implementation of available decisional aids & tools development of culturally tailored educational interventions, care, and training

The VCI-S Study on prostate Cancer http://nss.notss.com/comps/cisrc/project1/index.asp Nihal.Mohamed@mountsinai.org

Thank you for your attention

The VCI-S Study on prostate Cancer http://nss.notss.com/comps/cisrc/project1/index.asp Nihal.Mohamed@mountsinai.org

Results: Depressive Symptoms over time by race

Results: Depressive symptoms by treatment & race

Worries about cancer recurrence at 6M 2-item scale How worried are you that prostate cancer will recur? How worried are you that prostate cancer might spread? Not at all (1)-------------------------(5) very much Inter-item correlation was r =.82 (p <.001).

Differences among blacks & whites in Patterns of associations among study outcomes