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Award Number: DAMD17-00-1-0097 


AD 


TITLE: Treatment Decisions in Localized Prostate Cancer: 

Patient, Partner, and Physician 


PRINCIPAL INVESTIGATOR: Katrina Armstrong, M.D., MSCE 


CONTRACTING ORGANIZATION: University of Pennsylvania 

Philadelphia, Pennsylvania 19104 


REPORT DATE: April 2002 


TYPE OF REPORT: Annual 


PREPARED FOR: U.S. Army Medical Research and Materiel Command 
Fort Detrick, Maryland 21702-5012 


DISTRIBUTION STATEMENT: Approved for Public Release; 

Distribution Unlimited 


The views, opinions and/or findings contained in this report are 
those of the author(s) and should not be construed as an official 
Department of the Army position, policy or decision unless so 
designated by other documentation. 



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1. AGENCY USE ONLY (Leave blank) 2. REPORT DATE 

April 2002 

3. REPORT TYPE AND DATES COVERED 

Annual (15 Mar 01 - 14 Mar 02) 

4. TITLE AND SUBTITLE 

Treatment Decisions in Localized Prostate Cancer: Patient, 
Partner, and Physician 

5. FUNDING NUMBERS 

DAMD17-00-1-0097 

6. AUTHOR(S) 

Katrina Armstrong, M.D., MSCE 

7. PERFORMING ORGANIZATION NAME(S) AND ADDRESS(ES) 

University of Pennsylvania 

Philadelphia, Pennsylvania 19104 

E-Mail: karmstro@mail.med.upenn.edu 

8. PERFORMING ORGANIZATION 

REPORT NUMBER 

9. SPONSORING / MONITORING AGENCY NAME{S) AND ADDRESS(ES) 

U.S. Army Medical Research and Materiel Command 

Fort Detrick, Maryland 21702-5012 

A A 

10. SPONSORI 
AGENCY R 

0209: 

MG / MONITORING 

EPORT NUMBER 

1A / — 

11. SUPPLEMENTARY NOTES J | 1 

Report contains color ^ M 

so 026 

12a. DISTRIBUTION / AVAILABILITY STATEMENT 

Approved for Public Release; Distribution Unlimited 

12b. DISTRIBUTION CODE 

13. ABSTRACT (Maximum 200 Words) 

“Treatment Decisions in Localized Prostate Cancer: Patient, Partner and Physician,” is a project that aims to 
develop and refine an innovative new model of prostate cancer decision making, that will form the foundation of 
a research and clinical program to understand, support and improve decision making in prostate cancer. This 
project is using a cross-sectional survey to explore the role of the patient, partner and physician in treatment 
decisions and to examine the effect of preferences, perceived preferences, and actual preferences on treatment 
decisions, decision satisfaction and decision process. Many valuable steps have been taken in the first year of 
this grant, including the development of a pilot questionnaire, administration of the pilot questionnaire, 
development of the protocol for the study and development of patient, spouse and physician questionnaires. 
Enrollment for the study began in November, 2000. 

14. SUBJECT TERMS 

prostate cancer, decision making 

15. NUMBER OF PAGES 

42 

16. PRICE CODE 

17. SECURITY CLASSIFICATION 18. SECURITY CLASSIFICATION 
OF REPORT OF THIS PAGE 

Unclassified Unclassified 

19. SECURITY CLASSIFICATION 

OF ABSTRACT 

Unclassified 

20. LIMITATION OF ABSTRACT 

Unlimited 


NSN 7540-01-280-5500 


Standard Form 298 (Rev. 2-89) 

Prescribed by ANSI Std. Z39-18 
298-102 



















Table of Contents 


Cover.1 

SF 298.2 

Introduction.3 

Body.4 

Key Research Accomplishments.5 

Reportabie Outcomes.6 

Conciusions.10 

Appendix A: Patient survey. 

Appendix B: Partner survey. 

Appendix C: Physician survey. 













Introduction 


“Treatment Decisions in Localized Prostate Cancer: Patient, Partner and 
Physician,” is a project that aims to develop and refine an innovative new model of 
prostate cancer decision making, that will form the foundation of a research and clinical 
program to understand, support and improve decision making in prostate cancer. We 
use a cross-sectional survey of patients, their spouses and their physicians to explore 
the role of the patient, partner and physician in treatment decisions, and to examine the 
effect of preferences, perceived preferences, and actual preferences on treatment 
decisions, decision satisfaction and decision process. By characterizing the role of the 
partner and the presence of significant misperceptions in the triad, and explicating the 
process of decision making under conditions of routine care, results of this project will 
serve as a basis for launching a research program in prostate cancer decision making. 
The guiding assumption of this work is that facilitation of communication and 
identification and resolution of misperceptions in the patient-partner-physician triad will 
improve patient satisfaction in decision making concerning localized prostate cancer. 


3 



Body 


Task 1: Focus group discussions 

Task 1 has been completed, as reported in our 2001 Annual Report 

Task 2: Development of Survey Instruments 

Task 2 has been completed, as we reported in our 2001 Annual Report. A final 
patient survey, partner survey, and doctor survey are included in his report (Appendix A, 
B and C). 

Task 3: Preparation of Interim Reports and Manuscripts 
The annual report is provided here. 

Task 4: Cross-sectional survey 

Identification and recruitment of subjects 

This task is complete, as we reported in our 2001 Annual Report. 

Enroiling subjects 

In November 2000, we began identifying consecutive patients and enrolling them 
in our study. To date, we have identified 90 patients from the Hospital at the University 
of Pennsylvania (HUP) and 102 patients from the Philadelphia Veterans’ Affairs Medical 
Center (VA). 

At HUP, 23 patients have been excluded: 2 because of mental disorders, 18 
have declined participation, and 3 could not be contacted by telephone. Of the 61 HUP 
patients from whom we obtained oral, witnessed consent to participation, 43 (70%) 
completed study questionnaires. Thirty-three of these 43 patients have spouses, and 29 
(88%) of the spouses completed a spouse questionnaire. 

At the VA, 27 patients have been excluded: 7 because of mental disorders, 12 
have declined participation, and 8 could not be contacted by telephone. Of the 55 VA 
patients from whom we obtained oral, witnessed consent to participation, 29 (53%) 
completed study questionnaires. Eighteen of these 29 patients have spouses, and 15 
(83%) of the spouses completed a spouse questionnaire. The 8 physicians at the VA 
have completed questionnaires about 67 of their patients. 


4 


Key Research Accomplishments 

• Continual accrual of newly diagnosed prostate cancer patients and data collection. 


5 



Reportable Outcomes 

• Three abstracts submitted to University of Pennsylvania Cancer Center Annual 
Scientific Symposium and Retreat. (Abstracts below.) 


ABSTRACT I: 

TREATMENT DECISION FACTORS IN MEN WITH NEWLY DIAGNOSED PROSTATE 

CANCER 

Andrea D. Gurmankin, Adam Kaufman, Peter A. Ubel, James C. Coyne, S. Bruce Malkowicz, Katrina 
Armstrong 


Prostate cancer treatment decisions can be difficult for patients because of the absence of a 
dominant treatment option and high-stakes, value-laden trade offs between higher survival rates 
and treatment side effects. How do patients weigh the many factors involved in prostate cancer 
treatment decisions and are these factors weighed differentially in those who choose surgery 
versus a nonsurgical treatment option? We investigated the importance of a series of decision 
factors in patients with newly diagnosed prostate cancer just after they had made their treatment 
decision. After obtaining written consent, surveys were mailed to consecutive patients at the 
Hospital of the University of Pennsylvania and the Philadelphia Veteran’s Affairs Medical Center 
(n=72). Table 1 shows the importance of each decision factor to all subjects, and a comparison of 
the importance of each decision factor to those who chose surgery versus those who chose a 
nonsurgical treatment. More than 85% of subjects reported that longevity, feeling certain that the 
cancer is completely gone, the “track record” of the treatment and the spouse’s opinion were very 
or extremely important in their decision. Chi Square tests comparing the importance of decision 
factors in those who chose surgery versus those who chose nonsurgical treatments revealed that 
the treatment’s “track record” and impotence were rated as very or extremely important 
significantly more often in men choosing surgery (p<.03 for both comparisons). Keeping one’s 
body intact and the cost of treatment were rated as very or extremely important significantly more 
often in men choosing a nonsurgical treatment (p<.02 for both comparisons). This study 
highlights several factors that influence decisions about treatment for localized prostate cancer. 

In the next year, we will continue to accrue patients and assess the relationship between these 
factors, treatment decisions, and long-term outcomes, such as decision satisfaction, satisfaction 
with treatment outcome, and quality of life. 


6 



Table 1. Importance of decision factors in all patients, and in patients choosing surgery versus a 
nonsurgical treatment __ 



% RESPONDING “VERY OR EXTREMELY IMPORTANT” 

Decision Factor 

All patients 
(n=72) 

Chose surgery 
(n=36) 

Chose 
nonsurgical 
treatment (n=36) 

X^test 
(p value) 

Longevity 

89 

92 

86 

>.05 

Feeling certain that cancer is 
completely gone 

87 

94 

79 

.06 

“Track record” of treatment 

86 

97 

74 

.005 

Spouse’s opinion 

86 

90 

79 

>.05 

Urologist’s opinion 

83 

81 

86 

>.05 

Incontinence 

83 

78 

89 

>.05 

How quickly the treatment 
works 

67 

72 

61 

>.05 

Impotence 

63 

75 

50 

.03 

Primary care doctor’s opinion 

59 

56 

63 

>.05 

Keeping my body intact 

56 

41 

69 

.02 

Recovery time from treatment 

51 

44 

57 

>.05 

Avoiding losing identity as a 
man 

51 

43 

59 

>.05 

Discomfort of the treatment 

42 

40 

44 

>.05 

Time it takes to get treatment 

39 

43 

35 

>.05 

Family member’s opinion 

35 

26 

45 

>.05 

Opinion of friend who has or 
had prostate cancer 

35 

32 

38 

>.05 

Risks of anesthesia 

33 

33 

33 

>.05 

Cost of treatment 

20 

5 

34 

.002 


7 














ABSTRACT II: 

INFORMATION-GATHERING PROCESS AND KNOWLEDGE OF TREATMENT OPTIONS IN MEN 
MAKING PROSTATE CANCER TREATMENT DECISIONS 

Andrea D. Gurmankin, Adam Kaufman, Peter A. Ubel, James C. Coyne, S. Bruce Malkowicz, Katrina 
Armstrong 

Prostate cancer treatment decisions can be difficult for patients because of the absence of a dominant 
treatment option and the high-stakes, value-laden trade offs between higher survival rates and treatment 
side effects. What is the process that patients go through to gather information about their treatment 
options in order to make this difficult decision and how well informed are patients at the end of this 
process? We investigated the information-gathering process and resulting knowledge of treatment options 
in patients with newly diagnosed prostate cancer. After obtaining written consent, surveys were mailed to 
consecutive patients at the Hospital of the University of Pennsylvania and the Philadelphia Veteran’s 
Affairs Medical Center (n=72) after a treatment decision had been made. Nearly all patients report getting 
information about treatment options from their urologist (93%), although 42% report wishing they had 
received more information from the urologist. The timing of this discussion varied, occurring before 
biopsy results were available for 27%, during the same conversation when biopsy results were told for 24% 
and in a conversation after biopsy results were told for 49%. Eighteen percent of patients reported getting a 
second opinion from another urologist and 67% report consulting with a radiation oncologist. Many 
patients also report getting information from their primary care doctor (58%), a friend/acquaintance who is 
a doctor (22%), prostate cancer survivors (57%), the internet (46%) and books/medical journals (59%). 
However, as shown in Figure 1, at the end of this information-gathering process, after patients had made 
their treatment decision, some patients report not having heard of some of the common treatment options. 
Over the next year, we will continue to accrue patients and explore potential causes of knowledge gaps, 
including patient ineligibility for a given treatment, patient sociodemographic characteristics, and provider 
characteristics. 


o 

“S 

(0 

o 


•D 

(0 


O 

£ 

S 



Figure 1. Patient knowledge of treatment options 


8 





ABSTRACT III: 


THE ROLE OF UROLOGISTS’ RECOMMENDATIONS IN TREATMENT 
DECISIONS OF MEN WITH NEWLY DIAGNOSED PROSTATE CANCER 


Andrea D. Gurmankin, Adam Kaufinan, Peter A. Ubel, James C. Coyne, S. Bruce Malkowicz, Katrina 
Armstrong 


Prostate cancer treatment decisions can be difficult for patients because of the absence of a dominant 
treatment option and high-stakes, value-laden trade offs between higher survival rates and treatment side 
effects. Physician recommendations can have a complex role in these medical decisions. On one hand, the 
difficulty of the decision may make patients more reliant on their physician’s recommendation. On the 
other hand, the value-laden nature of the decision may lead patients to disregard the recommendation and to 
make their ovm treatment decision. In this study, we explored the role of the urologist’s recommendation 
in the treatment decisions of men with newly diagnosed prostate cancer. After obtaining written consent, 
surveys were mailed to consecutive patients at the Hospital of the University of Pennsylvania and the 
Philadelphia Veteran’s Affairs Medical Center (VA) (n=72) after a treatment decision had been made. The 
8 urologists of the VA patients also completed a survey about each of their newly diagnosed prostate cancer 
patients (n=8, who completed surveys for 64 patients). Eighty-five percent of patients report wanting to 
hear their urologist’s recommendation, and 82% report receiving a recommendation, 59% of which were 
perceived to be very or extremely strong. The figure shows the percent of patients who report receiving a 
recommendation for each treatment option and the percent who chose each treatment option. Sixty-six 
percent of patients received a recommendation for surgery, 26% for radiation, 4% for watchful waiting, 2% 
for hormone therapy and 2% for seed implants. More patients than physicians believed that the patient had 
made the final treatment decision (74% versus 43% respectively). Although most patients report having 
made the final treatment decision, our data suggest that the physicians’ recommendations nevertheless 
played a significant role in patients’ treatment decisions. Over the next year, we will continue accruing 
patients (and at the VA, their respective physicians) and exploring the relationships between the role of the 
physician recommendation and patient characteristics and outcomes, such as decision satisfaction. 


c 

o 

n 

a 

o 



waiting therapy Implants 


□ Treatment 
recommended 

■ Treatment chose 


9 



Conclusions 


The past year has been productive and informative for this study. We have 
continued to enroll subjects into our study and have achieved an overall response rate of 
62% across both hospitals. We have begun to conduct preliminary analyses of the data 
and have submitted abstracts for submission to relevant conferences. 


10 



Appendix A: Patient survey 




MEN’S HEALTH CARE 
DECISION MAKING 
STUDY 


FOR YOU 

TO COMPLETE 


y 



if 


Thank you very much for your help. 
Please return in the enclosed envelope. 




m Departnient of Veterans Aff^rs 


VA RESEARCH CONSENT FORMS 



PATIENT CONSENT FORM 
Men’s Health Care Decision iVfaking Study 

L Plumose of study and how long it wfll last: I am being asked to participate in a research stucfy to 
understand how men’s health care decisions are made. The overall goal of the study is to develop ways 
to help patients and p artn er s make the best decision. 

2. Description of the study induding procedures to be used: My participation in this study will involve 
filling out a survey that will be mailed to my home. This survey will ask about my feelings about n^ 
health care deciaons. The ahemative procedure to participation in this stu(fy is no surv^. 

3. Descrqrtion of any procedures that may result in discomfort or inconvenience: The on^ 
inconvenience involved is the time requested to partidpate. 

4. Ihqpected risks of study: The risk to me is only an rmlikely chance of breach of confidentiality. 

5. Measures to avoid risks: Strict confidentiality measures will be taken at all times. My name and any 
identi^dng information will never appear on my questionnaire or in a data file with my responses, the 
questionnaire and data file will .remain locked iq) at all times. The file with identifying information will 
be destroyed at the completion of the study. The file with identifying information will be destroyed at 
the completion of the study, ff any pubhcation or presentations results from this research, you will not 
be identified by name. 

6. Expected benefits of study: The direct benefits to me fi’om tins study are none. However, the results 
of the study may benefit all men feeing health care dedaons. 

7. Other treatment available: N/A 


SUBJECTS IDENTIRCATION (LD^pto or give name-last, first, middle) 


I have read and understood this 
page of the consent form. 

Sulgect initials_ 

Witness initials 


Continued 


VAFORM 
JAN 1990 


10-1086 




8. Use of research resnhs: 1 understand that all iaformadon collected in dus trial vvill be ke|>t strictly 
confidratial except as may be required by law. No one outside of the study personnel will know the 
reason for my involvemeiit in the study. If any publication results from this research, I will not be 
identifr^ by name or in any form that could lead to my pemonai idendScation. 

9. Special circumstances; No special circumstances. 


Subject name 


Subject signature 


Subject address 


Witness name 


Witness signature 




Instructions 

This questionnaire asks about your experiences with the diagnosis of prostate cancer and 
deciding on a treatment. Your answers will be kept strictly confidential. It is important 
that you follow these guidelines when filling out this questionnaire: 

1. Please fill it out and return it to us AFTER you have made your prostate cancer 
treatment decision but BEFORE you have begun treatment for prostate cancer (i.e. 
surgery, radiation, seed implants, etc). But if you have already begun treatment, please fill 
out the questionnaire anyway. 

2. Please fdl out this questionnaire without talking to your partner. We are interested in 
YOUR thoughts, even on the questions that ask about your partner. So please do not get 
any information or input from your partner while Ailing out the questionnaire. 

3. Please answer every question to the best of your ability, even if you are unsure of your 
response. 

If you have any questions, please feel free to contact Andrea Gurmankin at 215 573-9722. 
Thank you in advance for your participation. 


Date you are filling out this questionnaire:_/_ ! _ 

Who is your urologist? _ (Your doctor will never see your responses) 

Part A. The first set of questions asks about your treatment decision. 


1 ) Which of the following possible treatments for prostate cancer have you heard of? 

(check all that you have heard of) 

□ Surgery (Radical prostatectomy- procedure where they remove the prostate) 

□ Radiation therapy 

□ Seed implants (Brachytherapy) 

□ Hormone therapy 

□ Watchful waiting (No treatment, but getting regular blood tests to check on the 
status of the cancer) 

2) Which treatment have you chosen? (check all that apply) 

□ Surgery □ Radiation therapy □ Watchful waiting 

□ Seed implants □ Hormone therapy □ Other (Please explain): 

3) Approximately when did you make your final decision about which treatment you would 
get for your prostate cancer? This includes deciding on watchful waiting. (Please just 
give your best estimate). 

/ / 

4) Approximately when did you begin treatment or when do you expect to begin treatment 
for prostate cancer? 

/ / _ 


2 





5) Please tell us how important each of the following factors were m your prostate cancel 
treatment decision, and then circle the one that was the most important factor in your 

Extremely Very Somewhat Slightly 

important important important important 

r 

decision. 

Not at all 
important 

a) possibility of impotence (inability to 
get or maintain an erection) 

□ 

□ 

□ 

□ 

□ 

b) possibility of incontinence (trouble 
controlling your urine) 

□ 

□ 

□ 

□ 

□ 

c) risks of anesthesia (the medicine given 
to patients to put them to sleep during 
surgery) 

□ 

□ 

□ 

□ 

□ 

d) feeling certain that the cancer is 
completely gone 

□ 

□ 

□ 

□ 

□ 

e) keeping my body intact 

□ 

□ 

□ 

□ 

□ 

f) avoiding losing my identity as a man 

□ 

□ 

□ 

□ 

□ 

g) desire to live as long as possible 

□ 

□ 

□ 

□ 

□ 

h) cost of the treatment 

□ 

□ 

□ 

□ 

□ 

i) discomfort of the treatment 

□ 

□ 

□ 

□ 

□ 

j) time it takes to get the treatment 

□ 

□ 

□ 

□ 

□ 

k) how long it takes to recover from the 
treatment 

□ 

□ 

□ 

□ 

□ 

1) ‘‘track record” of the treatment 

□ 

□ 

□ 

□ 

□ 

m) how quickly the treatment works 

□ 

□ 

□ 

□ 

□ 

n) my urologist’s opinion 

□ 

□ 

□ 

□ 

□ 

o) my primary care doctor’s opinion 

□ 

□ 

□ 

□ 

□ 

p) my partner’s opinion (leave blank if 
you don’t have a partner) 

□ 

□ 

□ 

□ 

□ 

q) another family member’s opinion 
(how are you related to this person?); 

□ 

□ 

□ 

□ 

□ 

r) opinion of a friend or acquaintance 
who has or has had prostate cancer 

□ 

□ 

□ 

□ 

□ 

s) information from other sources (what 
sources?): 

□ 

□ 

□ 

□ 

□ 

t) other (please explain): 

□ 

□ 

□ 

□ 

□ 


6) Now please circle the letter beside the one factor listed above in question 5 that was the 
most important factor in your treatment decision. 


3 




7) What have you done to get information about your treatment options? {check all that 
apply) 

□ Speak to my doctor 

W^ich doctor(s)? □ Urologist □ Primary care doctor □ Other 

□ Speak to friend/acquaintance who is a doctor 

□ Speak to prostate cancer survivors 

□ Get information on the internet 

□ Get information in books/medical journals 

□ Other (Please explain below where else you got information): 

8) Which statement best describes how much medical information you want? 

□ I want only the information needed to care for myself properly 

□ I want additional information only if it is good news 

□ I want as much information as possible, good and bad 

9) Which statement best describes the role you want to play in your medical decisions? 

□ I prefer to leave the decision to my doctor 

□ I prefer that my doctor make the final decision after seriously considering my opinion 

□ I prefer that my doctor and I share responsibility for making the decision 

□ I prefer to make the final decision after seriously considering my doctor’s opinion 

□ I prefer to make the final decision on the basis of the facts I learn from my doctor and 
elsewhere, without considering my doctor’s opinion 

Part B. The next questions ask about when you were first diagnosed with prostate cancer. 


1 ) Which doctor did you first speak to about whether you should get a biopsy to look for 
prostate cancer? 

□ My primary care doctor □ A friend/acquaintance who is a doctor 

□ A urologist □ Other (Please explain): 

2) When your doctor mentioned getting a prostate biopsy, did he/she ask your opinion 
about the idea? 

□ Yes □ No 

3) Which doctor did you first speak to about your treatment options for prostate cancer? 

□ My primary care doctor □ A ffiend/acquaintance who is a doctor 

□ A urologist □ Other (please explain): 

4) When did this conversation occur? 

□ during an appointment or conversation before I got my biopsy results 

□ during the same appointment or conversation in which I got my biopsy 
results 

D during an appointment or conversation at some point after I got my biopsy 
results 

□ Other (please explain): 

5) Was your partner present during this conversation? 

□ Yes □ No □ I have no partner 


4 




If the first time you talked to a doctor about treatment options was NOT with a urologist: 

6) a) When was the main conversation you had with a urologist about your treatment 

options? 

□ during an appointment or conversation before I got my biopsy results 

□ during the same appointment or conversation in which I got my biopsy results 

□ during an appointment or conversation at some point after I got my biopsy 
results 

□ Not applicable 

□ Other please explain): 

b) Was your partner present during this conversation about treatment options with the 
urologist? 

□ Yes □ No □ I have no partner 






Mfeft^U^ilidns asks more about your conversation with your urologist 

1) Approximately what was the date of your conversation with your urologist about your 
treatment options? (please give your best estimate) - ! - ! - 



2 ) 

3) 


4) 


5) 


6 ) 


About how much time did you spend talking with the urologist about your treatment 
options? (please give your best estimate) _minutes 


Would you have preferred to spend more or less time talking with the urologist? 



Much less 


A little 
less 




er more 

A little 

less 

more 

□ Yes 

□ No 

□ Yes 

□ No 

□ Yes 

□ No 

□ Yes 

□ No 

□ Yes 

□ No 


Much more 


Did the urologist mention the option of ^ 

a) getting surgery? 

b) getting radiation therapy? 

c) getting seed implants? 

d) getting hormone therapy? 

e) watchful waiting? 

Would you have preferred more or less information from the urologist? (Please circle a 

number below) ....^.5 

Much more 




'A-: 'N-. 

Much less 




A little 
less 


Neither more 
nor less 


^ v:' . ^ 

A little 
more 


If you had any questions for the urologist, did you feel free to ask your questions? 
□ I did not have any questions □ Yes □ No ->Why not?: 


5 









7) Did your urologist give you information about your chance of cure using numbers 
(for example, “a 2% chance”) or words (for example, “a very small chance”)? 

□ No numbers/only words □ Some numbers/some words 

□ Only numbers/no words □ No information given about chance of cure 

8) Would you have preferred that your doctor use words, numbers or both to explain your 
chance of cure? 

□ Words □ Numbers □ Both □ No preference 

9) Did the urologist recommend a particular treatment to you? □ Yes □ No 

If yes 

a) What was the urologist’s primary treatment recommendation? 

□ Surgery □ Radiation therapy □ Watchful waiting 

□ Seed implants □ Hormone therapy □ Other (Please explain): 


b) How strong was the urologist’s recommendation? {circle one number) 
1 2 3 4 

Not at all Slightly Somewhat Very 

strong strong strong strong 


5 

Extremely 

strong 


10) Did you want the urologist to provide a recommendation? □ Yes □ No 


11) Which treatment option did you favor BEFORE hearing the urologist’s recommendation? 

□ Surgery □ Radiation therapy □ Watchful waiting 

□ Seed implants □ Hormone therapy □ Other (Please explain): 


12) Did the urologist suggest that you speak to a radiation oncologist? □ Yes □ No 

13) Did you speak with a radiation oncologist? □ Yes □ No 

14) Did you get a second opinion from another urologist? □ Yes □ No 

15) Which of the following best describes how the decision about your prostate cancer 
treatment was made? 

□ My urologist made the final decision 

□ My urologist made the final decision after seriously considering my opinion 

□ My urologist and I shared responsibility for the final decision 

□ I made the final decision after seriously considering my urologist’s opinion 

□ I made the final decision on the basis of the facts I learned from my urologist 
and elsewhere, without considering my urologist’s opinion 


6 


1) How concerned are von about: 

Extremely 

concerned 

Veiy 

concerned 

Somewhat 

concerned 

Slightly 

concerned 

Not at all 
concerned 

a) experiencing impotence (trouble 
getting or maintaining an erection) 

□ 

□ 

□ 

□ 

□ 

b) experiencing incontinence (trouble 
controlling your urine) 

□ 

□ 

□ 

□ 

□ 

c) experiencing risks of anesthesia (the 
medicine given to patients to put 
them to sleep during surgery) 

□ 

□ 

□ 

□ 

□ 

d) getting the best chance of cure 

□ 

□ 

□ 

□ 

□ 


2) Please rate what you think your chance of impotence would be if you were to get each of the 


following treatments. For each one, assume you are ONLY getting tha 

one treatment. 


Not at all 
likely 

Slightly 

likely 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ 

□ 

□ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 

. ■■ ■ . . 

3) Please rate what you think your chance of incontinence would be if y 
the following treatments. For each one, assume you are ONLY gettinj 

ou were to get each of 
that one treatment. 


Not at all 
likely 

Slightly 

likely 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ 

□ 

□ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 

4) Please rate what you think your chance of cure would b< 
following treatments. For each one, assume you are ONI 

if you were to get each of the 

LY getting that one treatment. 


Not at all 
likely 

Slightly 

likely 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ 

□ 

□ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 


7 









Part E. Next we ask about what you think YOUR PARTNER thinks about different 
treatment options. We also ask about the discussions you two had about your 
options. If you do not have a partner, skip to Part F. Please remember to respond 
without input from your partner. 


1 How concerned do vou think 
vour partner is about you: 

Extremely 

concerned 

Very 

concerned 

Somewhat 

concerned 

Slightly 

concerned 

Not at all 
concerned 

a) experiencing incontinence 
(trouble controlling your urine)? 

□ 

□ 

□ 

□ 

□ 

b) experiencing impotence (trouble 
getting or maintaining an erection)? 

□ 

□ 

□ 

□ 

□ 

c) experiencing the risks of 
anesthesia (the medicine that they 
give to patients to put them to sleep 
during the surgery)? 

□ 

□ 

□ 

□ 

□ 

d) getting the best chance of cure 

□ 

□ 

□ 

□ 

□ 


2) Which treatment do you think your partner thinks has the best chance of cure for you? 

□ Surgery □ Radiation therapy □ Hormone therapy 

□ Watchful waiting □ Seed implants 

□ I don’t know what my partner thinks 

□ They all have the same chance of cure 


3) If it had been up to your partner, which treatment do you think she would have chosen 
for you? 

□ Surgery □ Radiation therapy □ Hormone therapy 

□ Watchful waiting □ Seed implants 

□ I don’t know what my partner would have chosen 

□ Other (please explain): 


4) How does your partner feel about the treatment that was chosen? 

□ Insisted that I get it □ Opposed the decision 

□ Supported the decision □ Insisted that I not get it 

□ I don’t know how my partner feels 

□ Other (please explain): 


Please continue to the next page -> 


8 






5) 


How often did you and your partner discuss your treatment options? (please circle a 


number below) 


Never 


Seldom 


Now and then 


4 . , 

Quite often 


Very often 


6 ) 


Would you have preferred to discuss your treatment options with your partner more or 





Neither more 
nor less 


A little 
more 


' 5 
Much 
more 


If you responded "ii^ver" to question 5, skip to question 10. Otherwise^ continue to question 
7. 

7) When you had these discussions about treatment options, who initiated them? 

□ Me □ My partner □ We both initiated some of the discussions. 


8 ) 

9) 


How satisfied were you with those discussions? (please circle a number below) 


Very 
dissatisfied 


Somewhat 

dissatisfied 


Neither satisfied 
nor dissatisfied 


Somewhat 

satisfied 


5 :,: 

Very 

satisfied 


How often did you and your partner get into a disagreement or conflict over the issue of 



Never 


Seldom 


Now and then 


■-; 4 

Quite often 


Verv often 


10) How strongly did you want your partner’s opinion to be factored into your treatment 
decision? Mease circle a number below) 

Notataii .. Alittie Somewhat Very Extremely 


Please continue to the next page 


9 






11) The following statements focus on the way your partner deals with the tact that you have 
prostate cancer. Please indicate to what extent your partner does or does not act in the ways 
described. 

Now and Quite Very 

Never Seldom then often often 

a) My partner tries to discuss it with 
me openly 

□ 

□ 

□ 

□ 

□ 

b) My partner asks me how I feel 

□ 

□ 

□ 

□ 

□ 

c) When something bothers me, my 
partner tries to discuss the problem 

□ 

□ 

□ 

□ 

□ 

d) My partner is full of understanding 
towards me 

□ 

□ 

□ 

□ 

□ 

e) My partner makes me feel that I’m 
not alone in this 

□ 

□ 

□ 

□ 

□ 

f) My partner tries to persuade me to 
follow the doctor’s instructions 

□ 

□ 

□ 

□ 

□ 

g) My partner tries to hide his or her 
worries about me 

□ 

□ 

□ 

□ 

□ 

h) My partner tries to act as if nothing 
is the matter 

□ 

□ 

□ 

□ 

□ 

i) My partner gives in when I make an 
issue of something 

□ 

□ 

□ 

□ 

□ 

j) My partner just waves my worries 
aside 

□ 

□ 

□ 

□ 

□ 

k) My partner does everything to 
prevent me from thinking about my 
disease 

□ 

□ 

□ 

□ 

□ 

1) My partner can’t endure me being 
concerned and acts as if she doesn’t 
notice my worries 

□ 

□ 

□ 

□ 

□ 

m) My partner takes over as much of 
mv work as possible 

□ 

□ 

□ 

□ 

□ 


Please continue to the next page -> 


10 





Strongly 

agree 

Agree 

Neither 
agree nor 
disagree 

Disagree 

Strongly 

disagree 

1)1 feel I have made an informed 
choice 



□ 

□ 

□ 

2) My decision shows what is most 
important for me 

□ 

□ 

□ 

□ 

□ 

3) I expect to stick to my decision. 

□ 

□ 

□ 

□ 

□ 

4) I am satisfied with my decision. 

□ 

□ 

□ 

□ 

□ 

5) This decision was hard for me 
to make 

□ 

□ 

□ 

□ 

□ 

6) I was unsure what to do in this 
decision 

□ 

□ 

□ 

□ 

□ 

7) It was clear what choice was 
best for me 

□ 

□ 

□ 

□ 

□ 

8) I am aware of the choices I have 
to manage my prostate cancer 

□ 

□ 

□ 

□ 

□ 

9) I feel I know the benefits of the 
treatments for prostate cancer 

□ 

□ 

□ 

□ 

□ 

10) I feel I know the risks and side 
effects of treatment for prostate 
cancer 

□ 

□ 

□ 

□ 

□ 

11)1 need more advice and 
information about the choices 

□ 

□ 

□ 

□ 

□ 

12) I know how important the 
benefits of the treatment for 
prostate cancer are to me in this 
decision 

□ 

□ 

□ 

□ 

□ 

13) I felt pressure from others in 
making this decision 

□ 

□ 

□ 

□ 

□ 

14) I had the right amount of 
support from others in making this 
decision 

□ 

□ 

□ 

□ 

□ 


11 





















Part G. The next questions ask about your background. 


1) What is your age?_years 

2) What is your race? 

□ African-American □ Caucasian □ Hispanic 

□ Asian-American □ Other (please specify)_ 


3) What level of education have you completed? (Circle one number) 
9 10 11 12 13 14 15 16 17 18 19 20 21+ 

high school college graduate school 


4) 


Which of the following conditions have you 
(check all that apply) 

□ high blood pressure 

□ diabetes 

□ stroke 

□ asthma 

□ cancer (other than prostate) 

□ chronic nervous trouble 

□ hernia or rupture 

□ drinking problems or alcoholism 

□ stomach ulcer or duodenal ulcer 


had in the past 12 months? 

□ heart trouble 

□ emotional or mental illness 

□ chronic bronchitis 

□ arthritis or rheumatism 

□ epilepsy 

□ tuberculosis 

□ chronic liver problem 

□ chronic gallbladder trouble 


5) Are you currently experiencing impotence? □ Yes 


□ No 


6) Are you currently experiencing incontinence? □ Yes □ No 

7) Do you currently have health insurance? DYes DNo DNot sure 

7a) If yes > please check the type of plan that best describes your current health insurance: 

□ Fee-for-service plan where you can go to any doctor or hospital 

□ HMO where your primary care doctor refers you to specialists 

□ PPO where you can go to any doctor or hospital on a list without getting a 
referral 

□ I don’t know which type of plan I have 



it'frelationship with youripartner. Ifyou donot have a 


1) Most people have some disagreements in their relationships. Below is a series of issues. 

We’d like you to tell us of any disagreement experienced between you and your partner over 
A«rh nf these issues in a tvnical month (this past month may not have been typical for you, 
since you were just diagnosed with prostate cancer). So for each issue, please tell us in a 
tvnical month, how much vou have agreed or disagreed about.... 

In a typical month, 
my partner and I have 

Always 

agreed 

Almost 

always 

agreed 

Occasionally 

agreed 

Frequently 

disagreed 

Almost 

always 

disagreed 

Always 

disagreed 

a) religious matters 

□ 

□ 

□ 

□ 

□ 

□ 

b) demonstration of 
affection 

□ 

□ 

□ 

□ 

□ 

□ 

c) sex relations 

□ 

□ 

□ 

□ 

□ 

□ 

d) conventionality 
(correct or proper 
behavior) 

□ 

□ 

□ 

□ 

□ 

□ 

e) making major 
decisions 

□ 

□ 

□ 

□ 

□ 

□ 

f) career decisions 

□ 

□ 

□ 

□ 

□ 

□ 


2) How often do you and your 
partner do the following 
things: 

All the 
time 

Most of 
the time 

More 
often 
than not 

Occasionally 

Rarely 

Never 

a) discuss or consider divorce, 
separation, or terminating your 
relationship? 

□ 

□ 

□ 

□ 

□ 

□ 

b) regret that you married? 

□ 

□ 

□ 

□ 

□ 

□ 

c) quarrel? 

□ 

□ 

□ 

□ 

□ 

□ 

d) “get on each other’s nerves?” 

□ 

□ 

□ 

□ 

□ 

□ 



Every day 

Almost 

every day 

Occasionally 

Rarely 

Never 

3) How often do you and your 
partner engage in outside 
interests together? 

□ 

□ 

□ 

□ 

□ 


13 






























r 


Below are some things that you and your partner might do. Please tell us how often 
vou think they occur between you and your partner. 


More 
than once 
a day 

Once a 
day 

Once or 
twice a 
week 

Once or 
twice a 
month 

Less than 

once a 

month 

Never 

4) Have a stimulating 
exchange of ideas 

□ 

□ 

□ 

□ 

□ 

□ 

5) Calmly discuss 
something 

□ 

□ 

□ 

□ 

□ 

□ 

6) Work together on a 
project 

□ 

□ 

□ 

□ 

□ 

□ 


7) How often does your partner go with you to your doctors’ appointments? 

1 2 3 4 5 

Never Once in a while Sometimes Frequently Always 


8) How long have you and your partner been together? _years 


Part I. This last section asks about your quality of life. 


1) During the past four weeks how 
much of the time ... 

All of 
the 
time 

Most 
of the 
time 

A good 
bit of 
the 
time 

Some of 
the time 

A little 
of the 
time 

None 
of the 
time 

a) have you been concerned or worried 
about loss of muscle tone? 

□ 

□ 

□ 

□ 

□ 

□ 

b) did you have negative feelings about 
the wav your body looks? 

□ 

□ 

□ 

□ 

□ 

□ 

c) did you avoid being seen without a 
shirt on? 

□ 

□ 

□ 

□ 

□ 

□ 

d) did you feel that your body was 
getting soft and flabby? 

□ 

□ 

□ 

□ 

□ 

□ 

e) were you concerned or worried about 
difficulty getting or keeping an erection? 

□ 

□ 

□ 

□ 

□ 

□ 

f) did you wish you could regain your 
sexual ability? 

□ 

□ 

□ 

□ 

□ 

□ 

g) did you feel frustrated about your 
sexual ability? 

□ 

□ 

□ 

□ 

□ 

□ 

h) did you feel despair over the loss of 
sexual ability? 

□ 

□ 

□ 

□ 

□ 

□ 


14 








2) How true or false has each of the 
following statements been for you during 
the past four weeks? 

Definitely 

true 

Mostly 

true 

Neither 
true no 
false 

Mostly 

false 

Definitely 

false 

a) I felt uncomfortable when my partner 
wanted to hug or kiss me. __ 

□ 

□ 

□ 

□ 

□ 

b) I felt affectionate about my partner. 

□ 

□ 

□ 

□ 

□ 

c) I felt that my partner was not satisfied 
with our sex life. j 

□ 

□ 

□ 

□ 

□ 

d) I felt that my partner may want to turn to 
others for affection. 

□ 

□ 

□ 

□ 

□ 

e) My partner was worried about my cancer. 

□ 

□ 

□ 

□ 

□ 


□ 

□ 

□ 

□ 

□ 






3) How true or false has each of the 
following statements been for you during 
the past four weeks? 

Definitely 

true 

Mostly 

true 

Neither 
true no 
false 

Mostly 

false 

Definitely 

false 

a) Since I've had cancer I feel that I have 
lost my ability to be aggressive. 

□ 

□ 

□ 

□ 

□ 

b) I feel that I've lost part of my manhood. 

□ 

□ 

□ 

□ 

□ 

c) I feel as if I'm going through a "change of 
life" like women do. 

□ 

□ 

□ 

□ 

□ 

d) I feel that what I say is not taken very 
seriously by others. 

□ 

□ 

□ 

□ 

□ 


4) During the past four weeks how 
much of the time... 

All of 
the 
time 

Most 
of the 
time 

A good 
bit of the 
time 

Some of 
the time 

A little 
of the 
time 

None of 
the time 

a) did you feel that your cancer kept 
you from being the friend you wanted 
to be? 

□ 

□ 

□ 

□ 

□ 

□ 

b) did you feel that other people don’t 
really understand what it’s like to 
have prostate cancer? 

□ 

□ 

□ 

□ 

□ 

□ 

c) did you feel that you were a bother 
to other people? 

□ 

□ 

□ 

□ 

□ 

□ 

jr r .. . , 

d) did you worry about eventually 
becoming vmable to take care of 
yourself? 

□ 

□ 

□ 

□ 

□ 

□ 

e) did you worry about your cancer, 
but keep it to yourself? 

□ 

□ 

□ 

□ 

□ 

□ 


15 




























r 



All of 
the 
time 

Most 
of the 
time 

A good 
bit of the 
time 

Some of 
the time 

A little 
of the 
time 

None of 
the time 

f) did you feel that others who are 
close to you try to hide their true 
feelings about your cancer? 

□ 

□ 

□ 

□ 

□ 

□ 

g) did you feel that others think less 
of you because of your health 
problems? 

□ 

□ 

□ 

□ 

□ 

□ 

h) have you felt weak and small? 

□ 

□ 

□ 

□ 

□ 

□ 

i) have you worried about the cancer 
spreading? 

□ 

□ 

□ 

□ 

□ 

□ 

j) have you thought about your 
cancer? 

□ 

□ 

□ 

□ 

□ 

□ 

k) have you worried about dying 
soon? 

□ 

□ 

□ 

□ 

□ 

□ 

1) have you been concerned about 
side-effects of your cancer treatment? 

□ 

□ 

□ 

□ 

□ 

□ 

m) have you felt that your cancer has 
given you a better outlook on your 
life? 

□ 

□ 

□ 

□ 

□ 

° 1 

-i 

n) have you felt that coping with your 
cancer has made you a stronger 
person? 

□ 

□ 

□ 

□ 

□ 

□ 

o) have you wished that you could 
change your mind about the kind of 
treatment you chose for your prostate 
cancer? 

□ 

□ 

□ 

□ 

□ 

□ 


5) How true or false has each of the 
following statements been for you 
during the past four weeks? 

Definitely 

true 

Mostly 

true 

Neither 
true nor 
false 

Mostly 

false 

Definitely 

false 

a) I feel that I would be better off if I had 
chosen another treatment for prostate 
cancer. 

□ 

□ 

□ 

□ 

□ 

b) It bothers me that other men with 
prostate cancer get treatment that is very 
different from what I will receive. 

□ 

□ 

□ 

□ 

□ 


Thank you for your participation. Please mail the completed survey 
in the enclosed, stamped, addressed envelope. 


16 





















Appendix B: Partner survey 




MEN’S HEALTH CARE 
DECISION MAKING 
STUDY 


FOR YOUR 
PARTNER 
TO COMPLETE 


Thank you very much for your help. 


Please return in the enclosed envelope. 






^ DepartmentofYeters nsAffa-rs |YA RESEARCH CONSENT FORMS - Mm 

# ' 

Subject Name:__Dale:_*__ 

Title of Study: Men's Health Care Decision Making Study ' 


Principal Investigator: 


. Bruce Malkcwicz, M.D. 


VAMG: PliiladelpMa 


FAKTNER. CONSENT FORM 


Men’s Health Care Decision Making Study ' 

1. Purpose of study aad how long k wffl last; I am adced to participate in a research study to 
understand how men’s health care decisions are made. The overall goal of the study is to develop ways 
to help patients and partners make the best decision. 

2. Descr^ptioa of the study iucludkig procedures to be used: My parddpadoa m this study will 

involve filling out a surv^ that will be mailed to my home. This survey will ask about my feelings 
^3Gut my partner’s hedth care dedaons. The akemafive proceAire to participafion in tMs study is no 
survey. . 

3. '.Descriptioa of aay procedures that may result m discomlort or mcoaveBieuce: The ody 
inconvenience involved is the time requested to participate. 

4. Ejected risks of study: The risk to me is only an unlikely chance of breach of confidentiality. 

5. Measures to avoid risks: Strict c(mfid^itidity measures wffl be tak^ at all times. My name and any 
identifying information will never appear on my questionnaire or in a data file with my responses, the 
questionnaire and data file will ranain locked up at all times, and wfil <mly be accesdble to the 
Principle Livestigator and the Project Manager. The file with identifying information will be destroyed 
at the completion of tire study, k* any pudication or. pres^katicms results fixsn tins researdr, you wtil 
not be identified by name 

6. Expectedbenefitsofstudy:Thedirectben^stomefi'omthisstudy arenone.Howeva', the results 
of the study may ben^ all men &cmg health care decisions. 

7. Other treatment available: N/A 

I have read and undostood this 
page of the consent form. 

- ^ ■ Sulgect initials __ 

iJECT'S IDENTIRCATION tVitnegg initials 


Continued 




S. Use of researcii results: I that all iufbnustioQ co ll ect ed in this trial will be kept stncdy 

confidential exc^ as may be required by law. No one outside of the study personnel will know the 
reascn&r my involyement in the study. If any publication results fi’om this research, I will not be 
identified by name or in any form that could lead to my personal identification. 

9. Special circumstances: No special circumstances. 


Subject name 


Subject signature 


Subject address 


Witness name 


Witness signatuie 



Instructions: 


This questionnaire asks about your experiences with your spouse or partner’s diagnosis of 
prostate cancer and deciding on a treatment. Your answers will be kept strictly 
confidential. It is extremely important that you follow these guidelines when filling out this 
questionnaire: 

1. Please fill it out and return it to us AFTER your partner’s treatment decision has been 
made but BEFORE your partner has begun or undergone treatment for prostate cancer 
(i.e. surgery, radiation, seed implants, etc). But if your partner has already begun 
treatment, please fill out the questionnaire anyway. 

2. Please fill out this questionnaire without any communication between you and your 
partner. We are interested in YOUR thoughts, even on the questions that ask about 
your partner. So please do not get any information or input from your spouse while 
filling out the questionnaire. 

3. Please answer every question to the best of your ability, even if you are unsure of your 
response. 

If you have any questions, please feel free to contact Andrea Gurmankin at 215 573 9722. 
Thank you in advance for your participation. 


Date you are filling out this questionnaire: / / 

1) Which of the following possible treatments for prostate cancer have you heard of? 

{check all that you have heard of) 

□ Surgery (Radical prostatectomy- procedure where they remove the prostate) 

□ Radiation therapy 

□ Seed implants (Brachytherapy) 

□ Hormone therapy 

□ Watchful waiting (No treatment, but getting regular blood tests to check on the 
status of the cancer) 


2) Please rate what you think your partner’s chance of impotence would be if he were to get 
each of the following treatments. For each one, assume he is ONLY getting that one 
treatment. _____,_ 



Not at all 
likely 

Slightly 

likely 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ 

□ 

□ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 


2 






3) Please rate what you think your partner’s chance of incontinence would be if he were to get 
each of the following treatments. For each one, assume he is ONLY getting that one 


ireaimeni. 

Not at all 
likely 

Slightly 

likely 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ 

□ 

□ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 


4') Please rate what you think your partner’s chance of cure would be if he were to get each of 


me lOllowinK ucauiiciiia. X 

M'UV'XJl 

Not at all 
likely 

Slightly 

likely 

_S2.—-- 

Somewhat 

likely 

Very likely 

Extremely 

likely 

a) Radical prostatectomy (surgery) 

□ 

□ 

□ 

□ 

□ 

b) Radiation therapy 

□ 

□ 

□ 

□ 

□ 

c) Hormone therapy 

□ 

□ 

□ 

□ 

□ 

d) Seed implants 

□ 

□ ^ 

□ 

□ ^ 

□ 

e) Watchful waiting (no treatment) 

□ 

□ 

□ 

□ 

□ 



How concerned are you about 
your partner: 

Extremely 

concerned 

Very 

concerned 

Somewhat 

concerned 

Slightly 

concerned 

Not at all 
concerned 

5) experiencing impotence (trouble 
getting or maintaining an 
erection) 

□ 

□ 

□ 

□ 

□ 

6) experiencing incontinence 
("trouble controlling his urine) 

□ 

□ 

□ 

□ 

□ 

7) experiencing risks of anesthesia 
(the medicine giyen to patients to 
nut them to sleep during stirgeiy) 

□ 

□ 

□ 

□ 

□ 

8) getting the best chance of cure 

□ 

□ 

□ 

□ 

□ 


If it haH been up to you, which treatment would you have chosen for your partner? 

□ Surgery □ Radiation therapy □ Watchful waiting 

□ Seed implants □ Hormone therapy □ Other (please explain): 


3 









Questions 10-13 ask about YOUR thoughts about wbat your PARTNER thinks about 
different treatments and possible side effects. Please remember to respond without input 
from your partner. _______ 


How concerned do vou think vour 
nartner is about: 

Extremely 

concerned 

Very 

concerned 

Somewhat 

concerned 

Slightly 

concerned 

Not at all 
concerned 

10) experiencing incontinence 
(trouble controlling his urine)? 

□ 

□ 

□ 

□ 

□ 

_ ^ ^ --- 

11) experiencing impotence (trouble 

getting or maintaining an ereetion)? 

□ 

□ 

□ 

□ 

□ 

12) experiencing the risks of 
anesthesia (the medicine that they 
give to patients to put them to sleep 
during the surgery)? 

□ 

□ 

□ 

□ 

□ 

13) getting the best chance of cure 

□ 

□ 

□ 

□ 

□ 


14) Which treatment do you think your partner thinks has the best chance of cure for him? 

□ Surgery □ Radiation therapy □ Watchful waiting 

□ Seed implants □ Hormone therapy □ Other (please explain): 


The next section asks about the discussions that you and your partner had about treatment 
options. ________—-- 


15) How often did you and your partner discuss his treatment options? (please circle a 

number below) . . 

ri . .2.'.3 ^ ' 5 

Never Seldom Now and then Quite often Very often 

16) Would you have preferred to discuss his treatment options more or less? (please circle a 
number below) 

^■'1 .2. 3 4 , ■ 5 

Much less A little Neither more A little Much 

less nor less more more 

If you responded “never” to question 15, skip to question 19. Otherwise, continue to question 
17. 

17) When you had these discussions about treatment options, who initiated them? 

□ Me □ My partner □ We both initiated some of the discussions. 


18) How satisfied were you with those discussions? (please circle a number below) 

^ I . . "■ ■' 2". 3 " ; "4"" ^ .5 

Very Somewhat Neither satisfied Somewhat Very 

dissatisfied dissatisfied nor dissatisfied satisfied satisfied 


4 







19) How often did you and your partner get into a disagreement or conflict over the issue of 
which treatment to choose? Mease circle a number below) 


Never 




Seldom 


Now and then 


":-;4 

Quite often 


Very often 


The following stateinents foeiis on the way you deal with the fact that your partner has 
nrnstate cancer. Please indicate to what extent you do or do not act in the ways described. 


Never 

Seldom 

Now and 
then 

Quite 

often 

Very 

often 

20) I try to discuss it with my partner 
openly 

□ 

□ 

□ 

□ 

□ 

21) I ask my partner how he feels 

□ 

□ 

□ 

□ 

□ 

22) When something bothers my 
partner, I try to discuss the 
problem 

□ 

□ 

□ 

□ 

□ 

23) I am full of understanding towards 
my partner 

□ 

□ 

□ 

□ 

□ 

24) I make my partner feel that he is 
not alone in this 

□ 

□ 

□ 

□ 

□ 

25) I try to persuade my partner to 
follow the doctor’s instructions 

□ 

□ 

□ 

□ 

□ 

26) I try to hide my worries about my 
partner 

□ 

□ 

□ 

□ 

□ 

27) I try to act as if nothing is the 
matter 

□ 

□ 

□ 

□ 

□ 

28) I give in when my partner makes an 
issue of something 

□ 

□ 

□ 

□ 

□ 

29) I just wave my partner’s worries 
aside 

□ 

□ 

□ 

□ 

□ 

30) I do everything to prevent my 
partner from thinking about his 
disease 

□ 

□ 

□ 

□ 

□ 

31)1 can’t endure my partner being 
concerned and act as if I do not 
notice mv partner’s worries. 

□ 

□ 

□ 

□ 

□ 

32) I take over as much of my partner’s 
work as possible. 

□ 

□ 

□ 

□ 

□ 


33) 


How strongly did you want your opinion to be factored into your partner’s treatment 
decision? (Circle a number below) 


Not at all 


A little 


3,, 

Somewhat 


Very 


Extremely 


34) How satisfied are you with the information you have about your partner’s prostate cancer 


diagnosis and treatment options? (Circle a number below) 

.* -- - .C 


Very 
dissatisfied 


Somewhat 

dissatisfied 


Neither satisfied 
nor dissatisfied 


4 

Somewhat 

satisfied 


Very 

satisfied 


5 





35) What is your age?_years 

36) What is your race? 

□ African-American □ Caucasian □ Hispanic 

□ Asian-American □ Other (please specify)_ 

37) What level of education have you completed? {Circle a number below) 

9 10 11 12 13 14 15 16 17 18 19 20 21+ 

high school college graduate school 


Thank you for your participation. Please mail the completed survey 
in the enclosed, stamped, addressed envelope. 





Appendix C: Physician survey 


Date 


/ 


/ 


Patient name 



1) Which of the following treatment options did you mention to the patient? 

getting surgery □ Yes □ No getting hormone therapy □ Yes □ No 

getting radiation therapy □ Yes □ No watchful waiting □ Yes □ No 

getting seed implants □ Yes □ No 

2) Did you recommend a particular treatment to the patient? □ Yes □ No (Tjf no, skip to #5) 

3) What was your primary recommendation {check one)'? 

□ Radical prostatectomy □ Radiation therapy □ Hormone therapy 

□ Brachytherapy □ Watchful waiting □ Other (Please explain): 


4) How strong was your recommendation for this treatment option? {check one option) 


□ Not at all 
strong 


□ Slightly 
strong 


Somewhat 

strong 


□ Very 
strong 


□ Extremely 
strong 


5) Do you think the patient ^9^ have preferred more or less information from you? (choose one) 


Much less A little Neither more A little Much more 

less nor less more 


6) Do you think the patient asked all of the questions that he had? □ Yes □ No 


7) Which statement best describes how much medical information this patient wants? 

□ He wants only the information needed to care for himself properly. 

□ He wants additional information only if it is good news. 

□ He wants as much information as possible, good and bad. 

8) Which statement best describes the role this patient wants to play in his medical decisions? 

□ He prefers to leave the decision to his doctor 

□ He prefers that the doctor make the final decision after seriously considering his opinion 

□ He prefers that he and the doctor share responsibility for making the decision 

□ He prefers to make the final decision after seriously considering the doctor’s opinion. 

□ He prefers to make the final decision on the basis of the facts he learns from the doctor and elsewhere, 
without considering the doctor’s opinion. 

9) Did you suggest that the patient speak to a radiation oncologist? □ Yes □ No 


contiime to next page 











10) Compared to other newly diagnosed prostate cancer patients, how much did this patient ask 
questions or elicit information about his diagnosis, treatment options and/or prognosis? 

1 2 3 4 5 

Much less A little less Neither more A little more Much more 

than others than others nor less than others than others 


11) How concerned do you 
think this patient is about: 

Extremely 

Very 

Somewhat 

Slightly 

Not at 
all 

I don’t 
know 

a) experiencing impotence 

□ 

□ 

□ 

□ 

□ 

□ 

b) experiencing incontinence 

□ 

□ 

□ 

□ 

□ 

□ 

c) experiencing risks of anesthesia 

□ 

□ 

□ 

□ 

□ 

□ 

d) getting the best chance of cure 

□ 

□ 

□ 

□ 

□ 

□ 


12) Did you give the patient information about his chance of cure using numbers (for example, 
“a 2% chance”) or words (for example, “a very small chance”)? 

□ No numbers/only words □ Some numbers/some words 

□ Only numbers/no words □ No information given about chance of cure 

13) Using the response options below, please rate what you think this patient’s chance of cure 
would be if he were to get each of the following treatments? For each treatment, assume he is 
ONLY getting that one treatment. (Enter 1 for not at all likely, 2 for slightly likely, 2 for somewhat 
likely, 4 for very likely and 5 for extremely likely). 

_Radical prostatectomy _Radiation therapy _Hormone therapy 

_Brachytherapy _Watchful waiting 


14) Which best describes how the patient’s treatment decision was made? 

□ I made the final decision 

□ I made the final decision after seriously considering the patient’s opinion 

□ The patient and I shared responsibility for the final decision. 

□ The patient made the final decision after seriously considering my opinion. 

□ The patient made the final decision on the basis of the facts he learned from me and elsewhere, without 
considering my opinion. 

□ 1 don’t know (because the patient made the decision with another doctor) 

□ The decision has not been made yet 


Thank you for completing our questionnaire.