192 Appendix 6
Men’s Sexual Function and Self Perception following Prostate Cancer
Interview questions INTRODUCTION
Thank you for agreeing to take part in this interview. The main aim of this study is to find out as much information as possible about the impact that particular treatments for prostate cancer may have on various aspects of your life and on sexual functioning in particular.
I have in front of me a series of questions that I would like to ask you about your experiences with prostate cancer treatment. Everybody in the study is asked the same questions. Some questions may be less relevant to your situation, but as this is a research project it is important that we ask everybody exactly the same questions.
If any of the questions are unclear, it is my job to help you understand the content of these questions. So, please do not hesitate to ask me to repeat a question or provide further explanation of what is meant by that question.
The whole interview should probably take approximately one hour of your time.
Please let me know if any questions are upsetting to you, or if you would prefer not to answer any question. We can stop the interview or take a break at any time.
I‟d like to remind you that we are going to audio-tape this interview so that we can analyse the information we collect. I‟m going to put the tape on now.
193 INTERVIEW QUESTIONS
To start the interview I‟d like to get a little background information with my first questions.
1. Which of the following treatments have you undergone?
Radical Prostatectomy/External Beam Radiotherapy/ Seed Brachytherapy/
High dose Rate Brachytherapy/hormone therapy (androgen deprivation).
The following questions ask about the effects of the treatment on your quality of life – by the word „treatment” I mean the combination of all treatments you have undergone for prostate cancer until now.
2. When did you commence treatment? How long since you finished the treatment?
If on hormonal treatment: For how long did you receive hormonal treatment?
What were the reasons that hormonal treatment stopped?
3. Were possible effects on sexual life explained to you prior to commencing treatment?
Did you understand what they said?
4. How did you expect the treatment to affect your life?
Have your expectations changed?
Did you expect to experience any adverse effects?
I‟d like to ask you some more personal questions now – is that ok with you? Remember, this interview remains confidential - no one else will be able to identify your answers to these questions.
5. How would you describe your interest in sex prior to treatment?
How would you describe your interest in sex now?
6. How would you rate your sexual activity prior to treatment?
How would you rate your sexual activity now?
194 7. What changes, if any, have you noticed in sexual activity over the course of your
treatment?
If changes have occurred when did you first notice them?
If changes have occurred what made you notice them?
To what do you attribute any changes that may have occurred?
8. How do you manage your sexual activity since treatment?
(If appropriate - enquire about specific techniques, erectile medications/aids etc.)
How do you feel about having to use different techniques/medications?
9. a) If currently in a partnership:
How has your partner responded to your treatment?
Prior to diagnosis were you and your partner able to discuss relationship and sexual issues openly/easily?
Were you able to talk with your partner about your feelings during the diagnosis, decision making time and treatment?
Prior to treatment, did you ever talk with your partner about how you would manage any sexual difficulties that might arise as a result of treatment?
If so, how did you plan to manage them? After treatment were you able to manage any sexual difficulties as you had planned?
In your opinion, has the diagnosis/treatment affected your relationship with your partner?
Do you think your partner would agree?
How do you feel about your partner now?
If your feelings about your partner have changed since diagnosis and treatment, how have they changed?
Is there anything specific to which you attribute the change?
b) If currently NOT in a partnership:
After the diagnosis, did you think a lot about how the treatment might impact on establishing new potentially intimate relationships?
Since treatment, have you had the opportunity to establish new potentially intimate relationships?
If YES: Have you experienced any difficulties related to your self-confidence, sense of masculinity or sexual function? Could you provide an example?
Have these difficulties interfered with/prevented you trying to establish new potentially intimate relationships in the future? How?
195 If NO: Do you think you will experience any difficulties related to
your self-confidence, sense of masculinity or sexual function? If so, what and why?
(If experiencing sexual difficulties) Have the sexual difficulties you are experiencing since treatment prevented you making opportunities to establish a new potentially intimate relationship? How?
10. What are the easiest and hardest parts of the changes in sexual function to cope with?
What helps you cope best with the treatment effects?
Was there something your doctor, hospital staff said or did, or something your partner, family, friends said or did that helped you cope easier with the treatment?
11. With the benefit of hindsight, do you think the information you were given at the time of diagnosis was sufficient for you to understand the potential impact of treatment on your life?
12. Now that you have experienced prostate cancer, do you think that any amount of information prior to diagnosis would have been sufficient for you to understand the impact of treatment on your sexual function and therefore your quality of life?
13. Looking back, is there anything else you feel would help/would have helped you cope better with your diagnosis, treatment and side effects?
14. Is there any advice you would like to give to the health professionals involved in the care of men with prostate cancer to improve their care of men with a similar condition to you, in the future?
196 DEBRIEFING
That brings us to the end of our interview. On behalf of myself and the rest of the research team, I‟d like to thank you for your time. We really appreciate the information you have given us, and we hope to use this information to improve our understanding of the impact of prostate cancer treatments on quality of life and sexuality in particular.
For all our research projects we offer to send a free summary of the results to participants. Would you be interested in receiving a summary of the results?
It is likely that these results will become available towards the end of the year. If you move or would like them to be sent elsewhere please update us with your new address details.
If you find that after our interview today you feel upset in any way, I‟d like to remind you that there is a clinical psychologist on the Uro-oncology team whom you may wish to talk things over with.
(If participant is reporting partner sexual issues)
There is a Female Sexual Medicine Clinic at Concord Hospital. If your partner is interested in more details I will be happy to send some information to her.
197 Appendix 7
TABLE 14 Men‟s Sexual Schema Items
MSS Item n Not descriptive (0-1) Descriptive (2-4) Very descriptive (5-6)
Conservative 24 1 (4%) 11 (46%) 12 (50%)
Soft-hearted 24 1 (4%) 5 (21%) 18 (75%)
Powerful 24 4 (17%) 15 (63%) 5 (20%)
Spontaneous 24 1 (4%) 15 ( 63%) 8 (33%)
Independent 24 0 (0%) 5 (21%) 19 (79%)
Inexperienced 24 16 (67%) 8 (33%) 0 (0%)
Domineering 24 12 (50%) 9 (37%) 3 (13%)
Loving 24 0 (0%) 4 (17%) 20 (83%)
Open-minded 24 0 (0%) 9 (37%) 15 (63%)
Feeling 24 0 (0%) 5 (21%) 19 (79%)
Arousable 24 3 (13%) 10 (42%) 11 (46%)
Broad-minded 24 0 (0%) 7 (29%) 17 (71%)
Passionate 24 0 (0%) 7 (29%) 17 (71%)
Aggressive 24 9 (38%) 11 (46%) 4 (16%)
Revealing 24 2 (9%) 14 (58%) 8 (33%)
Warm-hearted 24 2 (8%) 6 (25%) 16 (67%)
Exciting 24 3 (13%) 17 (71%) 4 (16%)
Direct 24 1 (4%) 11 (46%) 12 (50%)
Sensitive 24 0 (0%) 8 (33%) 16 (67%)
Reserved 24 3 (12%) 13 (54%) 8 (33%)
Experienced 24 0 0 (0%) 7(29.2%) 17 (70.8%)
Romantic 24 1 (4%) 11 (46%) 12 (50%)
Compassionate 24 0 (0%) 6 (25%) 18 (75%)
Liberal 24 0 (0%) 13 (54%) 11 (46%)
Individualistic 24 1 (4%) 9 (38%) 14 (58%)
Sensual 24 0 (0%) 13 (54%) 11 (46%)
Outspoken 24 4 (17%) 12 (50%) 8 (33%)
198 Appendix 8
GLOSSARY OF TERMS
ADT Androgen Deprivation Therapy: chemical agent used in the treatment of some prostate cancer to reduce testosterone levels to castrate level CT Computerised Axial Tomography: a medical imaging method which
generates a 3-dimensional image of a body structure
DRE Digital Rectal Examination : physical examination of the prostate via the rectum to assess the prostate
EBRT External Beam Radiotherapy
ED Erectile Dysfunction
EPIC Expanded Prostate Cancer Index Composite
FACT-P Functional Assessment of Cancer Therapy-Prostate scale
FAIT-U Functional Assessment of Incontinence Therapy – Urinary symptoms subscale
Gleason Score System of summing the most common and second most common cancer cell patterns used by pathologists to assess the severity of prostate cancer in biopsied tissue samples. A score (1 to 5) is assigned to the most prominent cancer cell pattern and then the second most prominent cancer cell pattern is also scored (1 to 5). Those 2 scores are added e.g. Gleason Score =7 may be 3+4 or 4+3
HADS Hospital Anxiety and Depression Scale MSHQ Male Sexual Health Questionnaire scale MSS Men‟s Sexual Self-Schema scale
PSA Prostate Specific Antigen
RT Radiotherapy
SCNF-SF34 Supportive Care Needs Survey Short Form 34 SEAR Self-esteem and Relationship questionnaire