Active surveillance for low-risk localized prostate cancer: what do men and their partners think?

Abstract

Background.

Active surveillance (AS) is recognized as a reasonable treatment option for low-risk localized prostate cancer (LPC) but continues to be chosen by a minority of men. To date, limited data are available regarding reasons why men with low-risk LPC adopt AS.

Purpose.

The aim of this study is to better understand conceptualizations, experiences and reasons why men with low-risk LPC and their partners adopt AS.

Methods.

We conducted five focus groups (FGs), three among men with low-risk LPC who had chosen AS and two with their partners. FGs were video/audio recorded, transcribed and analysed using qualitative thematic analysis.

Results.

A total of 12 men and 6 partners (all women) participated in FG discussions. The most common reasons for choosing AS were seeing the LPC as ‘small’ or ‘low grade’ without need for immediate treatment and trusting their physician’s AS recommendation. The most common concerns about AS were perceived unreliability of prostate specific antigen, pain associated with prostate biopsies and potential cancer progression. Partners saw themselves as very involved in their husbands’ treatment decision-making process, more than men acknowledged them to be. Multiple terms including ‘watchful waiting’ were used interchangeably with AS. There appeared to be a lack of understanding that AS is not simply ‘doing nothing’ but is actually a recognized management option for low-risk LPC.

Conclusions.

Emphasizing the low risk of a man’s LPC and enhancing physician trust may increase acceptability of AS. Standardizing terminology and presenting AS as a reasonable and recognized management option may also help increase its adoption.

Introduction

With increasing concerns of overdiagnosis and overtreatment of localized prostate cancer (LPC) (1,2), active surveillance (AS) has emerged as an alternative to curative treatment (surgery or radiation) for patients with low-risk LPC (3,4). AS entails a protocol under which a patient is monitored through clinical examinations, prostate specific antigen (PSA) testing and prostate biopsies at regular intervals, and curative treatment is provided if the cancer shows evidence of progression. National clinical guidelines have included AS as a reasonable option for LPC (5). Historically, fewer than 10% of patients with LPC have adopted AS (6–8). Although recent reports have shown AS adoption is increasing in the USA, it continues to be chosen by only a minority of eligible men (9–11). A recent national survey of urologists and radiation oncologists in the USA found that 71.9% reported AS as effective but underused in the USA, and 71.0% stated that their patients were not interested in AS (12). While some studies have suggested that anxiety related to untreated cancer and fear of cancer progression (13,14) are the main reasons that men lack interest in AS, others have suggested lack of physician support and pressure from family members as other potentially important barriers (15,16). More research is needed to better understand men’s reasons for choosing AS and their experiences while on AS. Questions also remain about the role of partners of LPC patients and their influence on AS adoption and adherence. Furthermore, compared with White men, Black men bear a disproportionate burden of prostate cancer and report more treatment-related regret (17) and poorer post-treatment quality of life (18), which requires further study.

Given the paucity of relevant data regarding AS adoption, we conducted a qualitative study of Black and White men with LPC who chose AS and their partners to better understand their conceptualizations, experiences, reasons and concerns about AS. We based our study on existing literature on health behaviour (19–21), prostate cancer treatment decision-making (13,22,23) and the findings of our previous research (14,16,24,25), which showed that in addition to physician recommendation, patients’ personal preferences as well as anecdotal experiences of family and friends were also influential in the final treatment choice for LPC.

Methods

We conducted focus group (FG) discussions with low-risk LPC patients who had been on AS for at least 6 months. Participants were recruited from either a local cancer registry or an academic urologists’ office. The majority of the men were recruited through the cancer registry and lived throughout the Metro Detroit area. Other eligibility criteria included: (i) age <75 years; (ii) having no contraindications to surgery or radiation; (iii) Black or White race; and (iv) able to speak English. We used telephone interviews to identify eligible men. The partners of eligible patients were also invited to participate in concurrent FGs. All participants were given an information sheet explaining the study before the focus groups. A $25 gift card was given at the end of the session. The study was reviewed and approved by the Wayne State University Institutional Review Board.

A total of five FGs, three with AS patients and two with their partners, were conducted in the winter of 2013. Each FG discussion lasted approximately 2 h. A semi-structured FG discussion guide (Appendix) was developed and pilot tested based on our conceptual model and thorough literature review of research on treatment decision-making (13,14,23,26). Discussion topics included participants’ understanding of low-risk LPC; terms used by physicians (i.e. AS versus watchful waiting versus other terms); LPC treatment options offered, discussed and considered; how the treatment decision was made, including perceived barriers and facilitators; who was involved in the decision; and experience with and concerns about AS. All patient FGs were led by the same Black male moderator, and all of the partner FGs were led by the same Black female moderator. Moderator training was conducted by one of the authors (SE) who has extensive expertise in qualitative methods. Besides textbook materials, training included conducting a mock FG which was audio/video recorded, review of recorded material and group feedback. All FGs were audio/video recorded and professionally transcribed verbatim.

Data analysis

Thematic analysis of the transcripts was conducted using an iterative, qualitative process (27). Members of the research team, which included behavioral scientists, a physician and research assistants, independently read the transcripts to identify themes that emerged in response to both the discussion questions and unsolicited topics. The team then met to develop a coding dictionary consisting of both structural and contextual codes. Once these were identified, a codebook was created that listed each theme and provided accompanying definitions and illustrative quotes. Two investigators with qualitative research experiences then coded all transcripts independently and content was grouped into common themes. All research team members met periodically throughout the analysis process to discuss findings, reviewing themes and resolve inconsistencies via consensus.

Results

Participants’ characteristics

Three FGs with seven Black men and five White men were conducted. The median age of men was 61 years (range 47 to 71 years), and the median time on AS was 18 months (range 6 to 72 years). Two partner FGs were conducted, including four White and two Black women, with a median age of 57 years (range 47 to 71 years). Further demographic characteristics are summarized in Table 1.

Table 1.

Participants’ demographic characteristics

	Men	Partners
	(n = 12)	(n = 6)
Age (years)
<65	7	5
≥65	5	1
Duration on AS (in months)
≤12	5
13–24	5
>24	1
Missing	1
Race
Black	7	2
White	5	4
Education
≤High school	4	0
≥Some college	7	6
Missing	1	0
Marital status
Single or divorced	4	0
Married	8	6
Employment status
Unemployed	3	0
Part time/full time	4	4
Retired	5	2

Themes

Themes that arose in response to the moderator’s guide questions and additional emergent themes are described below. Patient quotes to illustrate the themes can be found in Table 2.

Table 2.

Themes and examples of quotes from focus groups of patients and partners.

Themes	Patients	Partners
Solicited themes
Terms used to describe AS	1) ‘So I said I’ll just wait and see. I took the wait and see process because if it get any worse, I’m gonna know what to do when the time comes’. 2) ‘...she (his physician) initially encouraged me to wait and watch. That was kind of where she, she said, you can wait and watch’. 3) ‘My doctor explained to me about the “watchful waiting,” and he said it was my choice’.	1) ‘… our best option may just be kinda sit on it for a while and just kind of wait and see what happens, rather than …’. 2) ‘These were his choices and so he’s doing the “watch and wait”.’ 3) ‘I think his doctor called it active surveillance, or “watchful waiting.” We call it “watchful waiting”.’
Influencing factors to pursue AS: Seeing their cancer “small” and “low-grade”	1) ‘So, basically when I first had this, by it being so small, and that treatment and stuff like that was so invasive. You know he’s, like, quality of life will change. So he just told me to, we’ll do a wait-and-see, and so I did that approach.’	1) ‘I said, we are not going to worry about this because the doctor told us this was at the low-grade …’
Trust in their physician	1) ‘…mine was entirely on the “recommendation of my physician.” Uh, I trusted him.’ 2) ‘I had “confidence in the physician” that I selected. He’s got really good track record … So, uh, I’m going to leave it in his hands for now’. 3) ‘I mean, my “biggest influence” of watch and wait was the urologist’.	1) ‘A big part of you making that decision is being “able to trust … doctor.”’ 2) ‘Somebody you can “trust,” somebody that you know. Somebody that knows your medical history’.
Concerns about PSA testing and prostate biopsies	1) ‘…one study read says that PSA’s valid. The other says, eh, it’s not so good. And if it’s not good, then develop a test that is’. 2) ‘My “fear” is that it (cancer) would get away. You’d miss your window of opportunity’. 3) ‘They gotta “do something for pain” (associated with biopsies)’.	1) ‘He (husband) rides bikes and so now when he know he’s going to have blood work, he makes sure to tell the doctor don’t do it in September. Do it in October. That’s a whole month off the bike because that can change the PSA’.
When to End AS	1) ‘Yeah as long as my markers don’t change, uh, I’ll keep listening to the advice of my urologist’. 2) ‘As long as things remain the same or increase slowly, uh, I intend to go active, uh, surveillance as long as I can’.	1) ‘I think he would stay on it (AS) so long as it’s contained. So long as the doctor is confident that it’s not spreading or going you know, growing at a rate where some other treatment would be appropriate’. 2) ‘So had he had the symptoms, it could have changed his decision’.
Unsolicited themes:
Medical mistrust from black men’s FG only	1) ‘I feel like because I was a black man that they were willing to use me as a guinea pig and if they could make some money, if I was stupid enough to say okay, I’m real scared’. 2) ‘…, and I went back and queried my friends who had gone to Dr. A and who had had the procedure at Hospital B. I got horror stories from them’.	N/A
Men’s denial from partner’s FG only	N/A	1) ‘He had all the symptoms (of prostate) and he was in so denial about it, ...’. 2) ‘(Talking about their men’s denial) If they just ignore it, it’ll go away, you know that?’ Another women-they believe that’.
Sharing cancer diagnosis and justifying decision to others	1) ‘… you really have to make sure that everybody in your family and your circle is in agreement…’.	1) ‘I told him, I don’t think we should tell, you know, any family until we have any answers, because it’s not going to do anything but raise us to a point of panic if they ask us questions we don’t have answers to’.

Descriptions and definitions of AS

Men and partners used various terms to describe AS; in fact, the phrase ‘active surveillance’ was rarely used. However, men were all able to provide a similar description of AS, mentioning periodic scheduled office visits, digital rectal examinations, PSA testing and prostate biopsies. The most commonly used terms by men and their partners to describe AS were ‘wait and see’, ‘watch and wait’ and ‘watchful waiting’. They reported that physicians also used multiple terms while describing their LPC management plan and that the term ‘active surveillance’ was rarely used by their physician. Participants generally were not aware that AS was considered a recognized treatment plan or option. Instead, they thought they were choosing ‘not to treat’ their cancer. One woman, when asked what her husband was doing to treat his prostate cancer, responded that he was ‘doing nothing’.

Some men said their physicians had been ‘watching’ their prostate prior to the cancer diagnosis by looking for changes in the texture of the prostate from ‘smooth’ to ‘bumpy’ on digital rectal exam and monitoring changes in their PSA level. The length of precancer diagnosis period varied, with some participants reporting physician monitoring for a couple of years prior to the actual cancer diagnosis. Some men viewed AS as a continuation of this precancer monitoring.

Reasons for choosing AS

Several men mentioned that, prior to their cancer diagnosis, they were not aware of different levels of aggressiveness of prostate cancer. Once they learned that they had a slow-growing, non-aggressive tumour, they were less afraid and found AS more appealing. Men and their partners had several reasons in common for choosing AS. First, AS was seen as a method of delaying or avoiding unnecessary treatment and preserving current function, while still having the option of later curative treatment. One partner stated that her husband chose to pursue AS to avoid any treatment side effects for as long as he could. Second, men and partners reported trusting their physicians’ advice and ability to monitor the cancer. Trust in their physician was paramount to men feeling comfortable choosing AS; for most men, it was considered prerequisite to pursuing AS. Additionally, most of the participants were comfortable with the notion of living with and monitoring their cancer. Men described their cancer as small, ‘low risk’ or ‘not aggressive’. In fact, some men admitted forgetting they have cancer at times. Despite their comfort in living with cancer, men acknowledged the small but real risk that cancer could grow silently, and they feared that they could miss the window of opportunity to effectively pursue curative treatment. Some younger men (late 40s) reported they were unsure about their choice of AS, while older men (early 70s) seemed to be more comfortable with it since they ‘already had a good life’.

Apart from these shared perspectives, the partners stressed the importance of their role in their husbands’ treatment decision, particularly in asking the physician questions and gathering information. They stated that their husbands were often overwhelmed or unable to manage the large amount of information about prostate cancer that they gained while making a treatment decision. Ultimately, though, the women stressed that the treatment decision was left to their husbands. As one partner stated, ‘The final decision had to be his because he has to live with it’.

Concerns about PSA testing and prostate biopsies

Throughout the focus groups, participants expressed concerns about post-diagnosis monitoring because of their perceptions that the PSA test has questionable reliability. While some men expressed the belief that their activities 2 or 3 days before a PSA test could impact their results, others were not aware of this. One man speculated that the high doses of antibiotic that he was given for another medical condition lowered one of his PSA levels; he reported getting his PSA tested by multiple labs as a means to check validity for his own ‘peace of mind’.

The partners also stated that outside factors could influence PSA results. One participant stated that her husband’s primary care physician initially tried to give him antibiotics rather than do a biopsy after receiving an elevated PSA level to rule out infection as the cause of the abnormal PSA level. Another participant stated that her husband always asked for his PSA test to be done in October to avoid any effects from his avid bike riding during the summer.

Most men mentioned pain associated with prostate biopsies. One man said that he heard horror stories from his friends about men ‘screaming’ from the biopsy procedure rooms. However, one man said the pain from biopsies was minimal because he had had his biopsies under general anesthesia. Both men and partners reported that selecting AS rather than actively treat the cancer was a difficult concept for family members to embrace and need extra explanations.

When to end AS

Both men and their partners reported that they relied on their physician’s recommendation as to when to halt AS and chose another treatment. One man stated that he would continue to listen to his urologist’s advice to pursue AS ‘as long as markers don’t change’. Women also mentioned that changes in test results or evidence of the cancer beginning to spread would be the reasons to end AS. Some men expressed other reasons. For example, one man stated he would continue AS as long as he could, as he was concerned that taking time off from work for curative treatment would practically finish his career. Another 71-year-old man who chose to receive surgery when his PSA level went up after 18 months on AS stated that he chose to end AS because he felt that, if he waited too long, his body might not take surgery as well as he could now. Women stressed that their men would still want to have control in choosing their treatment even after AS ended.

Interestingly, three unanticipated but important themes emerged in both men and partner groups.

Medical mistrust

In the FG with only Black men, participants expressed the concern that physicians may profit by providing unnecessary treatments or may be performing experimental procedures on Black patients. Participants in this group also mentioned that they would be more comfortable seeing a Black physician and that racial concordance would be one less concern about their treatment decision. This theme did not emerge in other FGs.

Denial

In the partners’ FGs, an emergent theme was that women felt their men often ignore symptoms of other health concerns and delay seeking medical treatment. The women also mentioned having noticed the symptoms of their partners’ illness before the men did and encouraging their partners to seek treatment.

Sharing the diagnosis of cancer and justifying the AS decision to others

Participants expressed concerns about sharing the diagnosis of cancer with their family members and friends. They were concerned about the potential influence of others’ opinions on their choice to adopt AS. Men and their partners found they had to justify or defend their decision to choose AS and felt the need to alleviate their families’ fears. Women stressed the importance of having enough information to answer questions before sharing the cancer diagnosis. Along with collecting information, women stated that they were also actively involved in sharing the diagnosis with others. Several participants stated that they emphasized the low-risk nature of their cancer as a way to provide reassurance to other family members. They also stated it was important to share the cancer diagnosis and include family and friends in the decision-making process, despite the potential challenges described above.

Discussion

The current study provides insights into the experiences of choosing AS a treatment option of men diagnosed with low-risk LPC and their partners. Two main factors identified that influenced participants’ decisions to be on AS were physician recommendation of AS and their view that their cancer was small or low risk, meaning no immediate treatment was necessary. Trust in their physician was critical for acceptance of an AS recommendation and adherence to the AS monitoring protocol. Interestingly, partners reported that they played a more important role in their husbands’ decision than the men themselves acknowledged. These findings make a novel contribution to our current understanding of AS uptake and AS adherence as there have been few reports on factors that can help increase AS uptake and adherence among eligible men. A recent published qualitative systematic review of the experience of adults who choose watchful waiting or AS included total of 16 studies from 2000 to 2015; among them 12 were related to prostate cancer (localized and/or advanced) but only 6 studies related to the choice of AS for LPC and only 3 studies focused on low-risk LPC, which is the focus of this study (28). Furthermore, our study provides additional new insight into the confusion resulting from multiple terms used to describe AS by both physicians and patients/partners and highlights the need for standardization of AS terminology and AS protocol. Another new finding is partners’ concerns about men’s denial of disease and/or its severity as a potential barrier to adherence to AS protocol.

The finding that participants in this study were not aware of AS being a recognized management strategy for low-risk LPC is consistent with prior research. Davison et al.(29) reported, in an almost all White (23 White, 2 Asians) sample of Canadians recruited from two large tertiary referral centers, that many patients and their partners did not realize that they were on a treatment plan; rather, they thought that they were just ‘doing nothing’ for their disease. Furthermore, the multiple terms used to describe AS in this study contributed to additional confusion among both LPC patients and their partners. It has been observed among other low-risk cancers that standardization of terminology resulted in better patient management and a decrease in unnecessary surgeries (30). Standardization of terminology can also facilitate consistent physician-patient, patient–partner and peer–peer discussions. Physician emphasis that AS is one of several recognized treatment options at the beginning of discussions about treatment options is an important step in increasing awareness and understanding about AS and its uptake.

In addition, concern over the reliability of PSA testing and the pain associated with prostate biopsies were reported as potential barriers for AS adherence. Participants felt that prostate cancer was a prevalent and an important disease that required better monitoring tests than PSA, suggesting confusion between the unreliability of PSA for prostate cancer screening and its role in an AS monitoring protocol. While patients were aware of the imperfection of PSA testing, they placed a great deal of emphasis on their PSA numbers and wanted to know what changes in PSA levels would necessitate a switch to curative treatment. Another barrier to AS monitoring was the pain associated with prostate biopsies. Men expressed a desire for help with the pain from prostate biopsies to reduce some of the anxiety around biopsies. Better education of patients and their families about the strengths and limitations of longitudinal PSA testing as well as strategies to minimize pain associated with prostate biopsies would help men’s adherence to AS protocol.

Partners in our study reported that they played a more important role in their husband’s adoption of AS than their husbands acknowledged. Partners stated that they influenced their husband’s AS decision and also made them more comfortable with the decision. However, they did emphasize they wanted their husband to make the final decision, as previously reported (31). Partners have been identified as having an important role in information gathering regarding prostate cancer and its treatment by other studies (31–33). The partners in our study served not only as information gatherers but also as information dissipaters or ‘news breakers’ of the diagnosis and treatment plan to other family members and friends. Partners as news breakers is a novel finding from our study, which has practical implications to include partner in the patient–physician shared treatment decision-making process for LPC, particularly in the AS discussion. In addition, partners expressed concerns that their husbands’ tendency to deny symptoms and to underplay their disease severity might lead to delay in seeking medical care or lack of adherence to the AS protocol. These behaviours have been found to be deleterious to men’s health (21,34).

Mistrust in the health care system, and subsequent wariness about following physician recommendations, was expressed by some of the Black men in this study. These participants expressed concern that physicians may offer unnecessary treatments for financial gain or use them as ‘guinea pigs’. Similar findings of mistrust in physicians and medical institutions by Black adults have been well-documented (19,20). These findings, along with the finding that physician recommendation is the most important factor for patients to adopt AS, reinforce the idea that strong physician–patient relationships are needed to minimize mistrust and increase AS uptake for eligible men. Indeed, a recent study reported that increasing trust in the physician and perceived closeness with the physician made patients more likely to accept the physician’s recommendation for AS (35). In addition, racial and cultural competence of physicians should help develop increased patient trust and closer patient–physician relationships, which in turn, should help patients’ acceptance of physicians’ AS recommendations, particularly in minority patient populations (36).

Study strengths and limitations

Our study has important strengths. First, this study included both White and Black men and their partners. Second, we included one FG with only Black men to maximize their willingness to freely share their opinions, including opinions on race-related issues. This is important because Black men bear a disproportionate burden of prostate cancer and reported more treatment-related regret compared with White men. Third, while most previous studies have focused on either men or their partners (37,38), we conducted FGs with both men and their partners to get a more complete picture of the AS decision-making process and its influencing factors. However, our study also has limitations. First, although we were able to hold FGs with partners, only a small number of partners agreed to participate, which prevented scheduling separate FGs for partners based on race. Second, we had a small number of White patients in two of the FGs, which may limit the variety of opinions expressed. Future studies with more participants in each group are needed to confirm our study findings.

Conclusions

Several facilitators and barriers of AS adoption and adherence have been identified from our qualitative study of men who chose AS and their partners. Physician recommendation of AS and men’s view that their cancer was small and low risk were two main factors that influenced men and their partners’ decisions to be on AS. Physician trust was critical for men and their partners to adopt and adhere to AS. Additionally, standardizing terminology used to describe AS and presenting AS as a reasonable and recognized management option may be helpful in increasing AS adoption. The observed statements around mistrust of physicians among Black men warrant further examination in a larger study. Enhancing trust in physicians and developing stronger patient–physician relationships would help alleviate men and their partners’ concerns and improve AS adoption. Partners reported a more important role in their husband’s decision than the men themselves acknowledged. In addition, partners’ concerns about men’s denial of disease and/or its severity as a potential barrier for men to adherence to AS protocol. Furthermore, developing more reliable markers than PSA level in monitoring cancer progression, and reducing pain and discomfort from prostate biopsies, may help AS adoption and adherence.

Declaration

Funding: this study is funded by American Cancer Society (grant number RSG-13-164-01-CPPB).

Ethics approval: the study was reviewed and approved by the Wayne State University Institutional Review Board.

Conflict of interest: the investigators had no conflicts of interest in conducting the study or writing the manuscript. The principal investigator (JX) was the recipient of grant funding from American Cancer Society and was involved in study design, data collection and analysis, interpreting data and writing this report. Investigators had full access to the analytic data set and accept full responsibility for the integrity of the data and the accuracy of the data analysis.

Appendix

Discussion guide for focus groups

A. Discussion questions for patients

1. Diagnosis: Definition of low-risk of prostate cancer (10 min)

   1. Is your prostate cancer low risk, intermediate risk or high risk?

   2. How do you know whether your cancer is low risk (or intermediate- or high risk) (Probes: doctor)

   3. (if doctor) How did your doctor (urologist) determine your cancer risk?

   4. (Probes: PSA, Gleason score, stage)

   5. In your own words, what are some other ways to say ‘low risk’ or ‘high risk’? What does low-risk prostate cancer mean to you?

      Is/was your opinion different from your loved one? How different?

2. Treatment options discussed and considered (10 min)

   After the initial diagnosis of prostate cancer:

   1. What options were offered to your loved one by his doctor/urologist?

   2. How do/did you think each of those options?

   3. What were the pros and cons of each option?

   4. Did you consider any other options besides AS?

   5. Is/was your opinion different from your loved one? How different?

3. Definition/conceptualization of Active Surveillance (AS) (10 min)

   1. In your own words, what do you think AS is?

   2. How does AS work? What does it require of your loved one and his doctor?

   3. What are pros and cons of AS?

   4. In your mind, is AS the same or different as Watchful Waiting (WW)?

      1. If they are different, what are the differences?

      2. How did his urologist describe AS or WW?

      3. What terms did he/she use?

      4. (Probes: wait and see, AS, WW, observation, expectant management)

      5. Did he/she recommend AS? Why or Why not?

      6. Did you accept his/her AS recommendation? Why or Why not?

           Is/was your opinion different from your loved one? How different?

4. How the treatment decision (AS) was made (20 min)

   1. Why do/did you think your loved one choose AS?

      1. (Probe)Treatment-related side effects (e.g. impotence, urinary and bowel incontinence)

      2. (Probe) Anxiety of potential cancer progression?

   2. How easy or difficult was it for him to make the decision for AS?

   3. What helped him choose AS? What were the barriers?

   4. Probes: Potential Facilitators and barriers of AS decision:

      Trust or distrust of physicians, particularly urologist(s)

      1. Role of religion or spiritual beliefs

      2. Information sources (doctors, internet, brochure, video, family, friends)

   5. Is/was your opinion different from your loved one? How different?

5. Second opinions, i.e. recommendation made by other doctors besides the diagnosing urologist (5–10 min)

   1. Did you seek 2nd opinions? Why or why not?

   2. (If yes) who did you see (another urologist/surgeon, radiation oncologist or PCP)? What did he/she recommend?

   3. (If no mention of radiation oncologist) Did you see a Radiation Oncologist? If yes, what did he/she recommend?

   4. (If no mention of radiation oncologist) Did you see your Primary Care Physician for his/her advice on your treatment decision? If yes, what did he/she recommend?

   5. Are they supportive of your AS decision? Why or why not?

6. The role of others (e.g. partner/spouse, family, friend) in decision making (10 min)

   1. Besides you and your doctor(s), who else was involved in the decision?

   2. What did those people recommend?

   3. What role do/did you think they should play in your treatment decision?

   4. Are they supportive of your AS decision? Why or why not?

7. Wrap-up: Advice (10–15 min) cancer.

     One final thing that we’re interested in is any advice that you would give to other men who need to make a treatment decision for low-risk prostate

B. Discussion questions for companions

1. Diagnosis: Definition of low risk of prostate cancer (10 min)

   1. Is your loved one (use husband or partner if appropriate) prostate cancer low risk, intermediate risk or high risk?

   2. How do you know whether his cancer is low-risk (or intermediate- or high risk) (Probe: doctor)

   3. (if doctor) How did his doctor (urologist) determine his cancer risk?

      (Probes: PSA, Gleason score, stage)

   4. In your own words, what are some other ways to say ‘low risk’ or ‘high risk’? What does low-risk prostate cancer mean to you?

2. Treatment options discussed and considered (10 min)

   After the initial diagnosis of prostate cancer:

   1. What options were offered to your loved one by his doctor/urologist?

   2. How do/did you think each of those options?

   3. What were the pros and cons of each option?

   4. Did you consider any other options besides AS?

   5. Is/was your opinion different from your loved one? How different?

3. Definition/conceptualization of Active Surveillance (AS) (10 min)

   1. In your own words, what do you think AS is?

   2. How does AS work? What does it require of your loved one and your doctor?

   3. What are pros and cons of AS?

   4. In your mind, is AS the same or different as Watchful Waiting (WW)?

      1. If they are different, what are the differences?

      2. How did your urologist describe AS or WW?

      3. What terms did he/she use?

         (Probe: wait and see, AS, WW, observation, expectant management)

      4. Did he/she recommend AS? Why or Why not?

      5. Did your loved one accept his/her AS recommendation? Why or Why not?

   5. Is/was your opinion different from your loved one? How different?

4. How the treatment decision (AS) was made (20 min)

   1. To your understanding, why do/did your loved one choose AS?

      1. (Probe)Treatment-related side effects (e.g. impotence, urinary and bowel incontinence)

      2. (Probe) Anxiety of potential cancer progression?

   2. How easy or difficult was it for him to make the decision for AS?

   3. What helped your loved one choose AS? What were the barriers?

      Probes: Potential facilitators and barriers of AS decision:

      1. Trust or distrust of physicians, particularly urologist(s)

      2. Role of religion or spiritual beliefs

      3. Information sources (doctors, internet, brochure, video, family, friends)

5. Second opinions and their recommendation made by other doctors besides the diagnosing urologist (5–10 min)

   1. Did you seek 2nd opinion? Why or why not?

   2. (If yes) who did your loved one see (another urologist/surgeon, radiation oncologist or PCP)? What did he/she recommend?

   3. (If no mention of radiation oncologist) Did you see a Radiation Oncologist? If yes, what did he/she recommend?

   4. (If no mention of PCP) Did you see your Primary Care Physician for his/her advice on your treatment decision? If yes, what did he/she recommend?

   5. Are they supportive of your AS decision? Why or why not?

   6. Is/was your opinion different from your loved one? How different?

6. The role of others (e.g. you, or partner/spouse, other family members, friends) in decision making (10 min)

   1. Were you involved in the AS decision? How involved were you?

   2. What role do/did you think you should play in your loved one’s treatment decision?

   3. Are you supportive of his AS decision?

   4. Is/was your opinion different from your loved one when the decision was first made? How about now?

   5. (If not AS) What did you recommend to your loved one? Why?

   6. Besides you, your loved one and his doctor(s), who else was involved in the decision?

   7. What did those people recommend?

7. Wrap-up: Advice (10–15 min)

     One final thing that we’re interested in is any advice that you would give to other men or his husband/partner who need to make a treatment decision for their low-risk prostate cancer.