Health-related quality of life following radical prostatectomy: long-term outcomes.

PURPOSE: To identify the health-related quality of life (HRQoL) domains that radical prostatectomy (RP) impacts most negatively and to define the recovery of these domains over 30 months of observation. PATIENTS AND METHODS: A total of 1,200 RP patients completed the Patient-Oriented Prostate Utility Scale-Psychometric (PORPUS-P; range 0-100, higher is better), a prostate cancer-specific HRQoL measure, prior to RP and at 0-3 (T1), 3-9 (T2), 9-18 (T3) and 18-30 (T4) months post-RP. HRQoL changes were examined using paired t tests and a mixed-effect growth curve model. Multivariable analyses were performed to investigate demographic and treatment factors predicting the change in HRQoL. RESULTS: Mean baseline PORPUS-P score, 83.1, fell to 66.5 (p < 0.001) at T1. Over time HRQoL improved but did not return to baseline (T4 mean 76.4, p < 0.001). Domain analysis revealed that sexual function (p < 0.001), sexual drive (p < 0.001), energy (p = 0.001) and bladder control (p < 0.001) failed to return to baseline at T4. Sexual function demonstrated the greatest impairment overall. The multivariable model revealed Black men experienced greater losses in global HRQoL compared with White men (coefficient -2.77, 95% CI -5.00 to -0.54, p = 0.015). High baseline HRQoL, pro-erectile aid use and bilateral nerve-sparing were significantly associated with smaller reductions in HRQoL post-RP. CONCLUSION: Overall HRQoL, sexual drive, sexual function, energy and bladder control do not return to preoperative levels within 30 months post-RP. Black patients experience the greatest reductions in HRQoL. HRQoL losses may be ameliorated by use of pro-erectile aids. These findings help to identify at-risk patient populations and inform survivorship programs.

Providing information about options in patient decision aids.

BACKGROUND: Legal, ethical, and psychological arguments indicate that patients need to receive information about their health situations before their care decisions are made. Patient decision aids (PtDAs) are designed to help patients make decisions; therefore, they should provide information that results in patients understanding their health situation. We reviewed studies that assessed the impact of PtDAs on patient knowledge and on their feeling of being uninformed. METHODS: Our data sources were a published Cochrane Collaboration review that included randomized controlled trials (RCTs) published before 2010 and a systematic review we conducted of RCTs published in 2010. We included trials that compared 1) PtDAs to usual care, and 2) PtDAs with simple information to PtDAs with more detailed information. Outcomes included patients' knowledge and their feeling of being uninformed. Data were analyzed quantitatively and qualitatively. Meta-analyses of similar studies estimated the size of differences. RESULTS: Thirty-nine RCTs compared a PtDA to usual care and all showed higher knowledge scores for patients in the PtDA groups; a meta-analysis estimated the advantage at 14 (of 100) points. Sixteen (of 39) studies used the Feeling Uninformed subscale; a meta-analysis estimated a reduction of 7 (of 100) points in the PtDA group over usual care. Twenty-one studies compared simple- to more-detailed information in PtDAs. There was a small overall advantage for more detailed information on knowledge scores; a meta-analysis estimated the advantage at 5 (of 100) points. Only one study found higher mean knowledge scores for simpler information. Nine (of 21) studies reported using the Feeling Uninformed subscale and a meta-analysis suggested a reduction of 3 (of 100) points for the more-detailed PtDAs over those with simpler information. Only one study found that simpler information resulted in patients feeling more informed. CONCLUSIONS: It appears that PtDAs result in patients having higher knowledge scores and in reduced feelings of being uninformed over patients who receive usual care. It also appears that PtDAs with more detailed information generally result in slightly higher knowledge and lower "Feeling Uninformed" scores than those with simpler information, but the differences are small and can be reversed under some circumstances.

Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence.

BACKGROUND: Coaching and guidance are structured approaches that can be used within or alongside patient decision aids (PtDAs) to facilitate the process of decision making. Coaching is provided by an individual, and guidance is embedded within the decision support materials. The purpose of this paper is to: a) present updated definitions of the concepts "coaching" and "guidance"; b) present an updated summary of current theoretical and empirical insights into the roles played by coaching/guidance in the context of PtDAs; and c) highlight emerging issues and research opportunities in this aspect of PtDA design. METHODS: We identified literature published since 2003 on shared decision making theoretical frameworks inclusive of coaching or guidance. We also conducted a sub-analysis of randomized controlled trials included in the 2011 Cochrane Collaboration Review of PtDAs with search results updated to December 2010. The sub-analysis was conducted on the characteristics of coaching and/or guidance included in any trial of PtDAs and trials that allowed the impact of coaching and/or guidance with PtDA to be compared to another intervention or usual care. RESULTS: Theoretical evidence continues to justify the use of coaching and/or guidance to better support patients in the process of thinking about a decision and in communicating their values/preferences with others. In 98 randomized controlled trials of PtDAs, 11 trials (11.2%) included coaching and 63 trials (64.3%) provided guidance. Compared to usual care, coaching provided alongside a PtDA improved knowledge and decreased mean costs. The impact on some other outcomes (e.g., participation in decision making, satisfaction, option chosen) was more variable, with some trials showing positive effects and other trials reporting no differences. For values-choice agreement, decisional conflict, adherence, and anxiety there were no differences between groups. None of these outcomes were worse when patients were exposed to decision coaching alongside a PtDA. No trials evaluated the effect of guidance provided within PtDAs. CONCLUSIONS: Theoretical evidence continues to justify the use of coaching and/or guidance to better support patients to participate in decision making. However, there are few randomized controlled trials that have compared the effectiveness of coaching used alongside PtDAs to PtDAs without coaching, and no trials have compared the PtDAs with guidance to those without guidance.

Assessing couples' preferences for postoperative sexual rehabilitation before radical prostatectomy.

OBJECTIVES: To evaluate the readiness of couples to engage in a sexual rehabilitation programme (SRP) before radical prostatectomy (RP) and to identify barriers to participation in an SRP after RP. To identify couples' current levels of sexual function and intimacy. PATIENTS AND METHODS: Patients completed the International Index of Erectile Function (IIEF) and their partners completed the Female Sexual Function Index (FSFI) to measure sexual function. Couples completed the Miller Social Intimacy Scale (MSIS) to measure intimacy in relationships. All participants were seen by a sexual health clinician after completing the measures to discuss barriers to participation in an SRP, and to receive an education session. RESULTS: Study participants comprised 143 patients and 104 partners. Patients <60 years old had significantly higher sexual function (P < 0.002) compared with those patients aged 60 years and older. Partners' sexual function scores were suggestive of need for further medical evaluation. Partners' participation was cited by patients as important to them enrolling in an SRP. Couples' intimacy levels were strongly correlated (P < 0.0001). CONCLUSIONS: Results suggest that less than 50% of patients are interested in receiving information about the impact of RP on sexual function before surgery. Female sexual function should be assessed as part of any SRP because they may require medical treatment if they are to support rehabilitation efforts for their spouses. Baseline assessment of a couple's sexual function and willingness to participate in an SRP should be performed preoperatively.

Promoting calcium and vitamin D intake to reduce the risk of osteoporosis in men on androgen deprivation therapy for recurrent prostate cancer.

PURPOSE: The aim of this study was to measure the impact of a patient education intervention aimed at increasing dietary intake of calcium and vitamin D in patients currently on androgen deprivation therapy (ADT) for the treatment of prostate cancer. METHODS: Sixty-one participants attended a one-time dietitian-delivered group education session focusing on diet and lifestyle strategies to reduce the risk of bone loss while on ADT. Dietary intake was assessed using the diet history questionnaire at baseline and again at approximately 1 year post-intervention. Demographics, medical history (including comorbidities), awareness of developing bone loss while on ADT, and information resources utilized were recorded at baseline. RESULTS: Fifty-one participants completed both time points. Over one third of men did not meet minimum current clinical guidelines for calcium or vitamin D intake at baseline. Sixty-three percent of men reported they were aware that osteoporosis was a known side effect of ADT therapy. Only supplemental calcium intake was significantly increased after the intervention. Men aware of their risk of developing bone loss while on ADT reported higher baseline calcium intake (p ≤ 0.05). Men undergoing ADT for less than 1 year at the time of intervention had significantly higher total calcium intake at follow-up compared to men on ADT for longer than 1 year (p = 0.038). Nonsignificant trends indicated that calcium and vitamin D intakes changed to a greater degree in those undergoing ADT for less than 1 year as well. CONCLUSIONS: Total calcium and vitamin D did not change significantly as a result of the intervention. Results suggest that promotion of dietary changes may be more effective if delivered closer to the initiation of therapy.

Patient acceptance of active surveillance as a treatment option for low-risk prostate cancer.

UNLABELLED: What's known on the subject? and What does the study add? Active surveillance is a management strategy that offers patients the hope of avoiding the side effects associated with unnecessary treatment. This study identifies the resources required by men who choose to be on active surveillance to support them in their treatment decision. OBJECTIVES: • To examine the decision-making processes of men on active surveillance (AS). • To identify the resources that men want to access to make, support and sustain them while on AS. PATIENTS AND METHODS: • Three-part survey developed for this study based on a qualitative study of 25 men on AS. • Survey items explored: role men assumed with their physician in treatment decision-making, factors influencing decision to go on AS, and resources required while on AS. • Surveys mailed out to cross-sectional sample of men on AS for less than 10 years. RESULTS: • 27% of the 73 men reported assuming an active role in treatment decision-making with their urologist, 41% a shared role and 32% a passive role. • 82% of men reported being comfortable and 90% being satisfied with their decision to be on AS. • 55% reported not being anxious about the cancer progressing while on AS. • Urologist's opinion, current age, and impact of treatment on urinary function were main factors influencing treatment decision. • Information on future treatment options, non-traditional treatments and diet considered most important resources. CONCLUSIONS: • Results suggest that once men make a decision to go on AS, they are satisfied with their decision and few report being anxious about progression of cancer. • Men are strongly influenced by the treating specialist in taking up AS. • Additional information and psychological support resources are required for men on AS.

Measuring decisional control preferences in men newly diagnosed with prostate cancer.

The Control Preferences Scale is widely used in decision research to measure patient preferences for participation in treatment decision making with health care providers. Following anecdotal reports of confusion with the scale the authors conducted an exploratory interview study to examine perceptions of the meaning and applicability of the Control Preferences Scale for men with localized prostate cancer seeking treatment in a multidisciplinary urology clinic. The preliminary data suggest potential validity challenges when the Control Preferences Scale is used in a multidisciplinary prostate cancer care setting, including the clinical context of localized prostate cancer and the meaning of shared decision making.

Development and evaluation of the personal patient profile-prostate (P3P), a Web-based decision support system for men newly diagnosed with localized prostate cancer.

BACKGROUND: Given that no other disease with the high incidence of localized prostate cancer (LPC) has so many treatments with so few certainties related to outcomes, many men are faced with assuming some responsibility for the treatment decision along with guidance from clinicians. Men strongly consider their own personal characteristics and other personal factors as important and influential to the decision. Clinical researchers have not developed or comprehensively investigated interventions to facilitate the insight and prioritizing of personal factors along with medical factors that are required of a man in preparation for the treatment decision. OBJECTIVES: The purpose of this pilot study was to develop and evaluate the feasibility and usability of a Web-based decision support technology, the Personal Patient Profile-Prostate (P3P), in men newly diagnosed with LPC. METHODS: Use cases were developed followed by infrastructure and content application. The program was provided on a personal desktop computer with a touch screen monitor. Participant responses to the query component of P3P determined the content of the multimedia educational and coaching intervention. The intervention was tailored to race, age, and personal factors reported as influencing the decision. Prepilot usability testing was conducted using a "think aloud" interview to identify navigation and content challenges. These issues were addressed prior to deployment in the clinic. A clinical pilot was conducted in an academic medical center where men sought consultation and treatment for LPC. Completion time, missing data, and acceptability were measured. RESULTS: Prepilot testing included 4 men with a past diagnosis of LPC who had completed therapy. Technical navigation issues were documented along with confusing content language. A total of 30 additional men with a recent diagnosis of LPC completed the P3P program in clinic prior to consulting with a urologist regarding treatment options. In a mean time of 46 minutes (SD 13 minutes), participants completed the P3P query and intervention components. Of a possible 4560 items for 30 participants, 22 (0.5%) were missing. Acceptability was reported as high overall. The sections of the intervention reported as most useful were the statistics graphs, priority information topics, and annotated external website links. CONCLUSIONS: The P3P intervention is a feasible and usable program to facilitate treatment decision making by men with newly diagnosed LPC. Testing in a multisite randomized trial with a diverse sample is warranted.

The self-management of uncertainty among men undertaking active surveillance for low-risk prostate cancer.

Asymptomatic men with low-risk, early-stage prostate cancer are eligible for active surveillance (AS), which offers a means to monitor the cancer while delaying treatment. However, AS operates within a unique set of circumstances that advocate monitoring, rather than immediate treatment, and men's health practices are central to coping with the inherent uncertainty of living with an untreated cancer. A qualitative study was completed to describe the range of men's self-management strategies used to overcome AS-related uncertainty. The study findings reveal two strategies. First, positioning prostate cancer as benign through stoicism and solitary discourses were common to men intent on "living a normal life." Second, men committed to "doing something extra" complemented AS protocols, and often collaborated with their wives to focus on diet as an adjunct therapy. Although most participants exhibited typical men's health practices, it is clear that tailored AS psychosocial interventions will benefit men and their families.

Measurement of factors influencing the participation of patients with prostate cancer in clinical trials: a Canadian perspective.

OBJECTIVE: To identify factors that patients with prostate cancer believe to be important determinants in their decisions about future enrolment in clinical trials. PATIENTS AND METHODS: In all, 122 patients (within 5 years of a diagnosis of prostate cancer) who had never been asked to participate in a clinical trial were asked to complete a 30-item measure of 'Factors Influencing Participation' in clinical trials. RESULTS: Factor analysis showed that variables influencing participation can be grouped into three areas: acceptability (e.g. recruitment process and altruistic beliefs); awareness (e.g. impact on quality of life, survivorship and randomization process); and accessibility (e.g. costs to patient, influence of family, age, time and need for extra tests). Awareness items were rated significantly more important by patients with T1 or T2 disease (P = 0.002). Patients who had not made a treatment decision also rated awareness (P = 0.05) and acceptability (P = 0.04) items higher. Patients with less than a university education identified access items as more important (P = 0.03). Helping future patients with prostate cancer, the impact of the study protocol on survival, being fully informed about the study, relationship with specialists, and impact of study on quality of life were identified as the five variables having the most influence on future enrolment. CONCLUSIONS: Men rated items related to awareness and acceptability as being the most important determinants to future enrolment in a clinical trial. Knowledge about what these men believe is important for their future participation in a clinical trial will help researchers to design protocols that address the needs of targeted patient groups.

Actual use and perceived usefulness of a web-based, decision support program for men with prostate cancer.

The purpose of this pilot study was to develop and test the Personal Patient Profile-Prostate (P4), a customized, Internet-based decision support system for men with localized prostate cancer. In a sample of 30 men, the P4 program was successfully implemented in a clinical setting. Men reported the program useful and web-logs documented a high use rate of menu-driven components of the intervention.

Feasibility of using a computer-assisted intervention to enhance the way women with breast cancer communicate with their physicians.

This study was conducted to evaluate the feasibility of using a computer intervention to enhance communication between healthcare professionals and women with breast cancer. Additional aims were to measure the extent to which women achieved their preferred decisional roles and satisfaction with the clinical medical appointment. This two-arm randomized clinical trial design included a convenience sample of 749 women with breast cancer attending 3 urban Canadian outpatient oncology clinics. Most women were older than 50 years and had a high school diploma or greater (57%). Women in the control group completed measures of decision preference before their clinic appointments. Women in the intervention group were encouraged to use the information and decision preference profiles generated by the computer program at their clinic appointments. Levels of involvement in decision making and satisfaction were measured after the clinic appointments. Results showed that although the majority of women in both groups did assume their preferred roles in decision making, a significantly higher proportion of women in the intervention group reported playing a more passive role than originally planned. Both groups reported high satisfaction levels. Future research is required to study how this computer intervention could be used by clinicians to provide information and decision support to these women.

Assessing information and decision preferences of men with prostate cancer and their partners.

The purpose of this study was to identify and compare information and decision preferences of men with prostate cancer and their partners at the time of diagnosis. A convenience sample of 80 couples was recruited from The Prostate Centre in Vancouver, Canada. Participants used a computerized version of two previously used measures with this population: Control Preferences Scale and Information Survey Questionnaire. Results showed that men had a preference to play either an active or a collaborative role in decision making with their physician (92.5%) and partners (100%). The majority (55%) of partners wanted to play a collaborative role in treatment decision making. Couples identified prognosis, stage of disease, treatment options, and side effects as the top 4 information preferences. Men ranked information on sexuality more important than partners, and partners ranked information on home self-care higher than men. Men who had sons, a positive family history, and lower levels of education ranked heredity risk significantly higher. Profiles of information categories did not differ according to role preferences of either men or partners. The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples. An individualized approach is suggested, given the high reliability of individual's profiles.

Patient evaluation of a discharge program following a radical prostatectomy.

PURPOSE: The immediate postoperative period following radical retropubic prostatectomy (RP) can be stressful, especially if men perceive discharge teaching to be incomplete. In this study, using two telephone interviews, patient satisfaction with a revised teaching program on one urology unit was evaluated. METHODS: Men undergoing a RP were given an information letter about the study at the pre-admission clinic. At days 2 and 30 post discharge, they were asked to rate the value of the call, a patient education booklet, a discharge pack of incontinence supplies, and overall satisfaction with the discharge experience. They were also asked about the use of community resources after discharge (general practitioner, urologist, emergency, home care). RESULTS: One hundred men participated. Overall, they were very satisfied with the discharge teaching and felt it provided them necessary information for recovery. However, 25 subjects used community resources inappropriately, due to concerns about wound care, catheter care, or urine retention. CONCLUSION: Although men were satisfied with the information provided in discharge program, their overuse of community resources indicates additional reinforcement is needed for management in the first month after surgery.

Prospective comparison of the impact of robotic-assisted laparoscopic radical prostatectomy versus open radical prostatectomy on health-related quality of life and decision regret.

INTRODUCTION: There is no conclusive evidence that the robotic-assisted laparoscopic radical prostatectomy (RARP) is superior to conventional open radical prostatectomy (ORP) when it comes to recovery of urinary and sexual function, and that the former surgical option results in less decision regret. METHODS: Patients scheduled for both surgical procedures were surveyed prior to surgery, and then again at 6 and 12 months following treatment using the sexual and urinary modules of the Expanded Prostate Cancer Index Composite (EPIC) measure. Decision regret was measured at 12 months. Propensity score regression adjustment was used to account for differences between treatment groups by summarizing all covariate information into a single probability and to simulate randomization. RESULTS: At 12 months, urinary summary scores approached baseline levels, while urinary bother scores had returned to baseline. Sexual summary and bother mean scores decreased by about half of what they were at baseline for both treatment groups at 6 and 12 months. No significant differences in the groups' sexual summary and bother domains were identified at either 6 or 12 months. Both groups' scores for decision regret were low. Moderate correlations (r(2) range -0.333 to -0.368) were between current levels of urinary and sexual function and decision regret at 12 months. CONCLUSION: The results of our study found no significant difference in health-related quality of life outcomes based on surgical procedure at 12 months. Moreover, patients in both groups reported low levels of decision regret at 12 months. Further multi-site prospective studies are required to address this study's limitations.

Masculinities and patient perspectives of communication about active surveillance for prostate cancer.

OBJECTIVE: The purpose of this study is to describe connections between masculinities and patient perspectives of active surveillance (AS) related communication with male physicians. METHOD: An interpretive descriptive qualitative design was used to explore patient-physician communication from the perspectives of 25 men on AS. In-depth, semistructured interviews were recorded, transcribed verbatim, and coded. Key concepts were described and a masculinities gender framework guided analyses of patients' perspectives. RESULTS: Patient-physician communication of diagnosis, treatment options, and specificities of AS featured prominently within participants' interviews. Most participants reported brevity in patient-physician communication amid accepting the physician's communication style and recommendations. Participants' accounts suggested "therapeutic" communications as contingent on positioning physicians as authoritative and assigning them control, while patients were stoic in accepting AS. However, some participants reported being confused about their diagnosis details and specific AS protocols, and resisted traditional physician-patient hierarchies, desiring more collaborative decision-making processes. In this regard communications emerged as "threat," in that participants lacked and/or lost confidence in their physician and were uncertain and anxious about the legitimacy of AS. These findings were interpreted within a gender framework, showing how patients drew on an array of masculine ideals, including stoicism, denying illness, and respecting expertise in different ways. CONCLUSIONS: Our novel findings illuminate complexities of men's perspectives about patient-physician communication in AS, and offer insights about how masculinities influence what can be understood as potentially helpful and unhelpful communication among this emergent patient population.

The Personal Patient Profile-Prostate decision support for men with localized prostate cancer: a multi-center randomized trial.

OBJECTIVE: The purpose of this trial was to compare usual patient education plus the Internet-based Personal Patient Profile-Prostate, vs. usual education alone, on conflict associated with decision making, plus explore time-to-treatment, and treatment choice. METHODS: A randomized, multi-center clinical trial was conducted with measures at baseline, 1-, and 6 months. Men with newly diagnosed localized prostate cancer (CaP) who sought consultation at urology, radiation oncology, or multi-disciplinary clinics in 4 geographically-distinct American cities were recruited. Intervention group participants used the Personal Patient Profile-Prostate, a decision support system comprised of customized text and video coaching regarding potential outcomes, influential factors, and communication with care providers. The primary outcome, patient-reported decisional conflict, was evaluated over time using generalized estimating equations to fit generalized linear models. Additional outcomes, time-to-treatment, treatment choice, and program acceptability/usefulness, were explored. RESULTS: A total of 494 eligible men were randomized (266 intervention; 228 control). The intervention reduced adjusted decisional conflict over time compared with the control group, for the uncertainty score (estimate -3.61; (confidence interval, -7.01, 0.22), and values clarity (estimate -3.57; confidence interval (-5.85,-1.30). Borderline effect was seen for the total decisional conflict score (estimate -1.75; confidence interval (-3.61,0.11). Time-to-treatment was comparable between groups, while undecided men in the intervention group chose brachytherapy more often than in the control group. Acceptability and usefulness were highly rated. CONCLUSION: The Personal Patient Profile-Prostate is the first intervention to significantly reduce decisional conflict in a multi-center trial of American men with newly diagnosed localized CaP. Our findings support efficacy of P3P for addressing decision uncertainty and facilitating patient selection of a CaP treatment that is consistent with the patient values and preferences.

Impact of health information-seeking behavior and personal factors on preferred role in treatment decision making in men with newly diagnosed prostate cancer.

BACKGROUND: Prostate cancer (PC) patients continue to have unmet information needs at the time of diagnosis and are often unable to communicate their preferences to physicians at the time of the treatment consultation. OBJECTIVE: The objective of the study was to determine the impact of health information-seeking behavior (HISB) and personal factors on patients' preferred role in treatment decision making (TDM). METHODS: Participants consisted of 150 men with newly diagnosed PC seen at 2 urology clinics in western Canada. A survey questionnaire was used to gather information on HISB, personal factors influencing treatment choice, and decision control. RESULTS: More than 90% of the participants reported a preference to play either an active or collaborative role in TDM and having either an "intense" or "complementary" HISB. No significant association was found between HISB and preferred role in TDM. Impact of treatment on survival and urinary function and the urologist's recommendation were identified as the 3 main factors influencing the treatment decision. CONCLUSIONS: At the time of diagnosis, the majority of men want to be involved in TDM and have access to information. Our findings suggest that the type and amount of information men want to access are dependent on HISB. Assessing factors having an impact on TDM may prove useful to guide patient-clinician treatment discussions. IMPLICATIONS FOR PRACTICE: This survey provides clinicians with a method to assess information and decision preferences of men with newly diagnosed PC and factors having an influence on treatment choice.

Factors influencing men undertaking active surveillance for the management of low-risk prostate cancer.

PURPOSE/OBJECTIVES: To identify and describe decision-making influences on men who decide to manage their low-risk prostate cancer with active surveillance. RESEARCH APPROACH: Qualitative, semistructured interview. SETTING: The Prostate Centre at Vancouver General Hospital in Canada. PARTICIPANTS: 25 patients diagnosed with low-risk prostate cancer and on active surveillance. METHODOLOGIC APPROACH: An interpretative, descriptive, qualitative design. MAIN RESEARCH VARIABLES: Factors that influenced men's decisions to take up active surveillance. FINDINGS: The specialists' description of the prostate cancer was the most influential factor on men choosing active surveillance. Patients did not consider their prostate cancer to be life threatening and, in general, were relieved that no treatment was required. Avoiding treatment-related suffering and physical dysfunction and side effects such as impotence and incontinence was cited as the major reason to delay treatment. Few men actively sought treatment or health-promotion information following their treatment decision. Female partners played a supportive role in the decision. The need for active treatment if the cancer progressed was acknowledged. Patients were hopeful that new treatments would be available when and if they needed them. Being older and having comorbidities did not preclude the desire for future active treatment. Patients carried on with their lives as usual and did not report having any major distress related to being on active surveillance. CONCLUSIONS: The study findings indicate that men are strongly influenced by the treating specialist in taking up active surveillance and planning future active treatments. As such, most men relied on their specialists' recommendation and did not perceive the need for any adjunct therapy or support until the cancer required active treatment. INTERPRETATION: Oncology nurses should work collaborative-ly with specialists to ensure that men receive the information they need to make informed treatment decisions.