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Clinical decision making in localized prostate cancer is a complicated, multidimensional process in which men often consider their own personal preferences, the advice of their healthcare providers, the opinions of their family and friends, and outside information sources. They synthesize all of this within the framework of their own unique socioeconomic situation, their social support network, and their preconceived impressions of their health and the health-care system. This is particularly germane when considering factors that influence a patient’s acceptance of and adherence to active surveillance (AS). We propose a conceptual framework based on a previously described systematic–heuristic theoretical model of decision making in this setting. We identify a number of factors that patients systematically prioritize when considering AS. These include desire for cancer control or cure, age at diagnosis, and concern regarding side effects of treatment. The way patients value these factors and effectively decide on treatment is influenced by more heuristic factors, including physician recommendation, opinion of friends and family members, and overall decision uncertainty. These heuristic factors also play an important role in adherence when a patient elects AS. Finally, some of the factors, particularly the heuristic ones, are potentially modifiable and may serve as targets for future interventions to increase acceptance of and adherence to AS.
A number of clinical practice guidelines currently recommend active surveillance (AS) as a treatment option for low-risk localized prostate cancer. For example, the National Comprehensive Cancer Network (1) specifically recommends AS as the only treatment option for men with less than a 20-year life expectancy and very low-risk disease (defined as prostate-specific antigen [PSA] <10ng/mL, Gleason sum 6 or less, stage T1c, less than three biopsy cores positive with less than 50% cancer involvement in all cores, and PSA density <0.15ng/ml/cm3) or men with low-risk disease (Gleason sum 6 or less, stage T1c–T2a, and PSA <10ng/mL) with less than a 10-year life expectancy. In cases of men with either 1) very low-risk disease and more than a 20-year life expectancy, 2) low-risk disease and greater than a 10-year life expectancy, or 3) intermediate risk disease (Gleason sum 7, stage T2b–T2c, or PSA 10–20ng/mL), the National Comprehensive Cancer Network guidelines recommend that AS be offered as a possible option for primary treatment, along with surgery or radiation. Similarly, the 2007 guidelines on the management of clinically localized prostate cancer issued by the American Urological Association (2) recommend that all patients with clinically localized prostate cancer be informed of AS, surgery, and radiation as potential treatment options as a standard. In the case of low- and intermediate risk disease in particular, the American Urological Association guidelines specifically suggest that AS is a reasonable treatment option.
Despite these recommendations, AS is generally underutilized in men with clinically localized prostate cancer. For example, Cooperberg et al. (3) analyzed data from 11 869 participants in the Cancer of the Prostate Strategic Urologic Research Endeavor program, an observational disease registry of men with prostate cancer diagnosed at 35 urologic practices across the United States. Although 36% of men had low-risk disease and 36% had intermediate risk disease, only 7% elected AS. Data from the Prostate Cancer Outcomes Study, a population-based cohort of men diagnosed with prostate cancer in 1994 and 1995, noted a higher rate of “conservative management” (18% of 3073 participants with clinically localized disease) but still less than what would be expected given the age and tumor risk distribution of the cohort (4). These data underscore the fact that there appear to be barriers to the use of AS in clinically localized prostate cancer.
In broadest terms, barriers can be categorized into two domains: physician-related and patient-related. As will be discussed later, physician recommendation plays a critical role in patient acceptance of AS. If the physician fails to discuss AS, or worse actively discourages the option, it is unlikely that the patient will accept this therapeutic option (5). A discussion of physician-related barriers to the acceptance of AS, however, is beyond the scope of this review. Rather, this chapter will focus specifically on patient-related factors that influence the acceptance of and adherence to AS in clinically localized prostate cancer. Specifically, we will first discuss the exact factors that patients weigh when considering therapies for localized disease, with particular attention to why they accept or reject AS. We will then consider how patients’ perceptions of these factors are influenced by others, specifically their physicians, family members, and friends. Finally, after discussing what factors determine patient acceptance of AS, we will discuss what influences adherence after men have decided to pursue AS as a therapeutic option for clinically localized disease. By identifying and reviewing the patient-related factors that influence acceptance of and adherence to AS, we may begin to increase utilization of this treatment strategy in appropriate patients, reducing overtreatment, and potentially improving patient-centered outcomes in this common malignancy.
To understand what factors draw patients toward or away from AS, it is helpful to consider how men decide on primary therapy for localized prostate cancer. It is assumed that, when making a clinical decision regarding treatment, patients will consider the different options with all their possible outcomes and weigh the importance of each outcome systematically, ultimately making a rational decision in a systematic manner (6). In practice, however, patients do not approach the decision in a systematic manner and often make decisions that are influenced by their prior experiences with cancer, their personal perceptions of their disease (which are often strongly influenced by others), and their willingness to accept risk. To account for this, Steginga and Occhipinti (7) proposed a hybrid heuristic–systematic processing model for decision making in localized prostate cancer that accounts for the paradoxical behavior described above. Systematic processing is an effortful process that requires gathering and analyzing information and integrating these data in such a way that an individual can make a decision. This process, however, is psychologically difficult and time-consuming for patients. To this end, there is a second mode of processing called heuristic processing. Heuristic processing requires minimal information processing and much less effort. Rather, people use heuristics—general expectancies, schemas, impressions, and “rules of thumb”—to interpret the current situation (8). Heuristics are often learned or shaped by individuals in their social world. When the two processing models interact, the decision-maker gathers or interprets information selectively according to previously held beliefs or attitudes (7). In the case of decision making in localized prostate cancer, patients systematically value certain outcomes more than others, but how they perceive the possibility of each outcome, the way they value each outcome, and their risk thresholds are influenced by these more heuristic influences (see Figure 1). Using the model as a conceptual framework, we will begin by discussing what outcomes and factors are valued by patients when assessing AS and will then discuss which outside influences change patients’ perceptions of these factors.
Men identify myriad issues that influence their decision making in prostate cancer. In fact, in one qualitative study of 60 men with prostate cancer, 18 different attributes of treatment were identified as “most important” (9). However, in almost all studies, cancer control and eradication were of great importance to patients and strongly influenced treatment choice. This issue is of such overwhelming significance to patients that one study noted that 18 out of the top 20 questions reported by newly diagnosed patients involved cancer control (10).
When considering the issue of cancer control specifically as it relates to AS, concern over cancer control tends to drive patients towards surgical intervention and is a key barrier to acceptance of AS. Anandadas et al. (11) prospectively studied 768 men with low- or intermediate-risk disease (defined as PSA <20ng/mL, Gleason sum of 7 or less, and stage T1 or 2 disease) who were counseled by a urologic oncologist, a radiation oncologist, and a urology nurse. Each patient was offered the option of surgery, external beam radiation therapy (EBRT), brachytherapy, or AS. Forty percent elected surgery, 31% EBRT, 21% brachytherapy, and 8% AS. The most common reason given for selecting surgery as treatment was “physical removal of the cancer,” with 60% of surgical patients giving this as their primary reason for undergoing prostatectomy. Interestingly, the most common reasons for electing EBRT or brachytherapy were “fear of other options” (27%) or “more convenient for my lifestyle” (39%). There was no predominant reason why men choose AS, with roughly 20% saying it was “more convenient for their lifestyle,” 20% citing a “variety of reasons,” and 25% stating “other unspecified reasons.” In a similar study, Holmboe and Concato (12) interviewed 102 men in Connecticut who had decided upon therapy but had not yet received it. The most common reason to select aggressive interventions, such as surgery or radiation, and reject watchful waiting was “strong evidence” of cancer control or cure and need to “combat” the tumor.
Although desire for cancer eradication and cure drives patients towards aggressive interventions (and away from AS), it is not the only patient factor that may be a barrier to the acceptance of AS. Age is also an important factor that patients consider when choosing therapy. Specifically, younger patients often are drawn to aggressive interventions, given their longer life expectancy. In one study of men choosing between surgery, radiation, and AS, roughly 70% of men who elected surgery over AS stated that they were “too young for less aggressive treatment” (13). Other researchers have noted similar findings (12).
Although cancer control or eradication and younger age are the two most common reasons for patients to select aggressive therapy, what are the patient factors that increase acceptance of AS? One possibility is the patient belief that the cancer is indolent and does not require immediate control or cure. Both qualitative and quantitative research indicates that this may be the case. Davison et al. (14) held semistructured interviews with 25 men diagnosed with low-risk prostate cancer who had elected to pursue AS. One of the dominant themes throughout the interviews was the patients’ perception that prostate cancer was not life-threatening. For example, one man acknowledged that he might ultimately require aggressive intervention, but for now the cancer was in a “gray zone.” Another participant noted that his specialist likened his prostate cancer to a “slow-moving turtle.”
This belief in the indolent nature of the tumor is a consistent theme in quantitative studies of men who selected AS as well. van den Bergh et al. (15) queried 150 men in the Prostate Cancer Research International: Active Surveillance study, a single-arm prospective trial of men on AS to determine what men perceived to be the approach’s advantages and disadvantages. Thirty-three percent noted that one of the advantages of AS was that it delayed unnecessary radical treatment, implying that they believed that the cancer was not aggressive enough to warrant surgery or radiation. Conversely, 30% of the men on the study noted that the “risk of unfavorable consequences on disease status, such as clinical stage progression or the development of metastases” to be a disadvantage, indicating that the men still worried about the possibility that the cancer could be more aggressive than originally suspected. In another study, 91% of men electing AS noted that they choose the approach because they “felt sure that [they] could still be cured with treatment if [their] cancer progressed” (16). This implies that, although men who elect AS still worry about cancer morbidity and mortality, their concern may be lessened by the knowledge that close follow-up would catch any progression early and ensure that they would have similar outcomes than if they were treated right away.
Sidana et al. (13) studied the decision-making process in 493 men under age 50 years treated for low-grade localized prostate cancer at a single academic medical center. The vast majority of patients (81%) underwent surgery, but 11% elected radiation and 5% chose AS. The investigators specifically asked the men why they elected one treatment over another. Among the surgical patients, when asked why they chose this approach over AS, the most common response was that it was “the best chance for cure” (90% of respondents). Among men who elected AS over surgery, the most common reason given was that the “cancer did not require more aggressive treatment” (70%). It is worth mentioning that patient perception of cancer aggressiveness is modifiable and could be a reasonable target for interventions to increase the acceptance of AS. Simply put, providing better patient information regarding the true risk of cancer morbidity and mortality in low-risk disease could change men’s perception of cancer aggressiveness and potentially increase the acceptance of AS in appropriate patients. Similarly, interventions that accurately describe AS protocols and underscore that the approach includes close follow-up with frequent PSA monitoring and repeat prostate biopsies could increase AS acceptance as well.
Another patient factor associated with acceptance of AS is increased concern regarding the side effects of aggressive therapy. In the study by Sidana et al. (13), 62% of men electing AS over surgery did so to avoid the side effects of the procedure. In the same study, the desire to “avoid [radiation therapy] side effects” was the most common reason why men selected AS over radiation, with 35% listing this as the primary reason for choosing AS. Numerous qualitative studies have also noted that men who elected AS over surgery often did so to avoid impotence and/or incontinence (17,18). In the study by Anandadas et al. (11), 10% of men on AS cited “afraid of the other options” and 15% cited “fear of side effects” as primary reasons to choose AS. In another study of men who elected AS, 44% of men mentioned concern over erectile dysfunction and 48% mentioned fear of incontinence among their primary reasons for selecting AS (16). In summary, concern over side effects from aggressive interventions is a patient-related factor associated with the acceptance of AS. Patients should be given honest and accurate estimates of their risk for urinary, sexual, and bowel symptoms after various therapies and allowed to decide how much concern they have regarding these possible outcomes.
The single most important “heuristic” influence that affects patient acceptance of AS is the doctor’s opinion. Almost all studies indicate that this is among the most important, if not the most important, factor for patients when selecting therapy. The treating physician’s opinion can increase acceptance of AS or act as a barrier. For example, Davison and Goldenberg (19) studied 73 men with low-risk prostate cancer and found that, of the 14 reasons cited for choosing AS, the urologist’s recommendation had the strongest influence. On a scale of 1 to 5 with 5 being the most important, urologist’s opinion had a mean score of 3.19, almost a full point higher than the next most important factor (current age: mean 2.38). Similarly, in a study of 105 men who elected AS for low-risk localized prostate cancer, 73% cited physician recommendation as the greatest influence on their decision to pursue AS (16). Qualitative studies have also demonstrated the importance of physician recommendation on patient acceptance of AS (20,21).
Not surprisingly, physician recommendation can be a strong barrier to acceptance of AS as well. In the study by Sidana et al. (13), among men who elected surgery over AS, doctor recommendation was an important factor in roughly 85% of cases and was surpassed in importance only by desire for cancer control. This is particularly problematic when one considers how often urologists recommend AS. The Family and Cancer Therapy Selection study surveyed 238 men and their urologists at the time of clinical decision making for localized prostate cancer to determine what treatment options were discussed and recommended. Urologists stated that they discussed AS in 72% of participants but only recommended the treatment 15% of the time (22). It is also worth noting that the quality and amount of information provided by urologists regarding AS may vary from patient to patient and may influence acceptance of AS (23).
There are other factors that may lessen the influence of the doctor’s opinion on decision making. Specifically, patient decision-making style and certainty regarding the decision may dampen the effect. Steginga and Occhipinti (7) studied the decision-making process in 111 men diagnosed with localized prostate cancer. Using a verbal protocol analysis technique and a number of validated measures, they assessed what patient-level characteristics modulate the influence of expert opinion and systematic processing on decision making. They noted that men who expressed little or no uncertainty about their decision were significantly less likely to use expert opinion in their decision making when compared to men who were uncertain at the time of decision making. Somewhat surprisingly, the researchers found no relationship between desire for shared decision making and influence of expert opinion. Further research is needed in this area.
Another important heuristic influence that may affect patient preferences and decision making is the opinion of the patient’s partner and/or family members. Work from our group in the Family and Cancer Therapy Selection study documents that partners’ opinions have a strong influence on patients during the decision-making process. We surveyed 193 patient–partner pairs as part of this study at the time of clinical decision making before treatment. Ninety-one percent of partners stated they very frequently discussed treatment options with the patient (24). Davison and Goldenberg (19) noted that in men opting for AS, “advice from partner and spouse” ranked sixth out of 14 in order of importance among factors that influenced the treatment decision. Similarly, Gorin et al. (16) noted that in men who opted for AS, “family members being supportive of this alternative” was the fourth most important factor out of 12 and ranked ahead of concerns about impotence or incontinence. Clearly, partners are an important influence in decision making.
That being said, partners are not generally supportive of AS as a treatment option. This is likely because partners tend to value quality-of-life outcomes, such as impotence or incontinence, much less than patients and instead primarily value cancer eradication and survival. For example, Srirangam et al. (25) queried 82 men with localized prostate cancer and their partners regarding partner involvement and preferences in decision making. When asking partners what was the most important factor in deciding on primary therapy, they cited a wide variety of responses, but the most common reason given was “total eradication of cancer.” In addition, although 55% of partners acknowledged that side effect profile was an important aspect in decision making, only 6% stated that this was the most important factor. When partners were asked about their treatment preference for the patient, 41% preferred surgery, 37% EBRT, 12% brachytherapy, and 10% had no clear favorite. However, no partner selected AS or watchful waiting. Other studies also showed that patients value quality-of-life outcomes more than their partners do in localized prostate cancer. Volk et al. (26) elicited health state utilities for a number of possible outcomes following treatment for localized disease. In general, the men tended to associate the common side effects of therapy with greater disutility than their partners do. For example, men had worse utility scores than their partners 66.5% of the time for severe incontinence and 55% of the time for complete impotence. If the partners do not feel negative outcomes in these domains are important, then it is not surprising that they value cancer eradication above all other factors and may be more likely to reject AS for their partners. Efforts to better inform partners regarding AS and help them to understand the patient’s preferences may increase acceptance of AS.
Little is known concerning which patient-related factors are associated with adherence to AS protocols, beyond the obvious clinical triggers, such as rising PSA levels or pathological progression on biopsy. One reason that little is known about patient factors that influence adherence is that most of the available literature in this space focuses on short-term (within 1 year of diagnosis) outcomes. Studies with longer term follow-up tend to focus on the clinical triggers. Although there is some debate as to whether a rising PSA should be considered “progression” in AS protocols (27), it is clear that if it appears that the disease is more aggressive than originally thought, it is probably appropriate for patients to abandon the AS strategy. Acknowledging this, various studies estimate that 10%–50% of patients on AS will undergo aggressive intervention in the absence of evidence of clinical disease progression (28,29). This begs the question: Are there patient factors that might predict this nonadherence that could potentially be the target of interventions?
Qualitative studies have suggested that men on AS experience increased anxiety, and that this may ultimately lead men to abandon AS (30–32). However, quantitative studies have failed to demonstrate that men on AS actually experience greater anxiety. van den Bergh et al. (33,34) prospectively assessed anxiety and distress using validated instruments in 129 men on AS for 9 months after diagnosis. They noted that anxiety and distress did not increase and remained acceptably low throughout the study. Steginga et al. (35) prospectively followed 111 men who underwent treatment for clinically localized prostate cancer for 1 year after diagnosis. Among these 111 men, 56% underwent radical prostatectomy, 19% EBRT, and 25% elected AS or watchful waiting. The research team assessed decisional uncertainty, prostate cancer uncertainty, decisional conflict, psychological distress, and health-related quality of life using validated instruments. They noted no differences in psychological distress from prostate cancer among the three treatment groups. Furthermore, psychological distress decreased with time from diagnosis in all groups. However, men who were “undecided” about treatment at baseline experienced greater psychological distress during the study period than those who had greater certainty regarding their decision at baseline. This is consistent with other researchers who have noted that decisional uncertainty is associated with increased psychological distress that may affect adherence in AS (36).
Numerous strategies have been proposed for reducing the decisional uncertainty that may ultimately result in decreased psychological stress and increased adherence in AS. Oliffe et al. (37) identified self-management strategies men use to overcome AS-related uncertainty. For example, men self-manage uncertainty by psychologically positioning their prostate cancer as “benign” and committing themselves to “living a normal life.” In addition, many of these men will undertake additional interventions, such as dietary or exercise changes, to “do something extra.” Psychosocial interventions that help men develop self-management strategies to overcome AS-related uncertainty may increase adherence.
One possible intervention that has been suggested to help men to cope with AS-related uncertainty is patient support groups, which have previously been noted to improve quality of life in men with prostate cancer (38). Unfortunately, studies specifically examining the role of support groups in AS adherence have noted either no effect or even a negative psychological effect. Chapple et al. (39) performed semistructured interviews on 50 men with localized prostate cancer and noted that men electing AS generally reported no help from support groups. In fact, one participant felt like he “had to defend himself” in the support group for electing AS. Kazer et al. (40) held focus groups with patients on AS to determine the informational and psychological needs of men who elected this strategy. Men on AS who attended support groups did not find them helpful. One recurrent theme that arose was that many of the participants turned to their partners and family members for support. This again underscores the need to better inform partners and family members regarding AS. Patients who reported that their family was supportive generally felt this was quite helpful and positive.
There are a number of factors that may influence patients’ acceptance of and adherence to AS in localized prostate cancer. We hypothesize that patients initially choose therapy using a combined systematic–heuristic approach. Patients systematically identify and prioritize certain factors, including need for cancer control or cure, age at diagnosis, concern over side effects based upon their personal preferences, prior experiences with cancer, and their overall outlook on life. However, this systematic ordering of preferences is influenced by heuristic elements, such as physician recommendation, partner’s preferences, and decisional uncertainty. Ultimately, patients who elect AS develop coping mechanisms to deal with heuristic influences that continue to exert pressure on them and affect adherence to AS protocols. Many of these factors could ultimately be the target of interventions to increase utilization of AS.
Dr Penson’s effort for this report was supported by grant numbers 1 R01 HS019356-01 and 1 R01 CA098430-01 from the National Institutes of Health.