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Keywords:

  • localized prostate carcinoma;
  • treatment;
  • decision-making

Abstract

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

BACKGROUND.

Multiple therapeutic options exist for localized prostate carcinoma, without conclusive evidence to guide the choice of treatment. Thus, treatment should reflect trade-offs between the probability of curing disease and the desire to avoid treatment-associated side effects. Factors that actually influence patient treatment preferences are poorly understood.

METHODS.

We reviewed medical records and carried out in-depth, semistructured interviews of 20 men with newly-diagnosed, clinically-localized prostate carcinoma in a Veterans Affairs Hospital following their first consultations with urologists and before treatments were initiated. Six to eight months after treatment, we carried out follow-up interviews. Interviews explored beliefs and attitudes about prostate cancer and treatment options, emotional reactions to the diagnosis, treatment preferences, information sources, and perceptions of interactions with urologists.

RESULTS.

Patient treatment preferences were not based on careful assessments of numerical risks for various clinical outcomes. Instead, feelings of fear and uncertainty contributed to a desire for rapid treatment, and specific preferences were profoundly influenced by misconceptions, especially about prostatectomy, and by anecdotes about the experiences of others with cancer. Few patients wanted to seek second opinions. Most patients received treatments that matched their initial preferences. Afterwards, they justified their choices in terms of the same misconceptions and anecdotal influences invoked during treatment deliberation.

CONCLUSIONS.

For men with localized prostate carcinoma, the treatment decision-making process would benefit from interventions that moderate feelings of fear and a desire for rapid treatment, dispel common and powerful misconceptions about prostate cancer and its therapies, and help patients avoid over-reliance on anecdotes. Cancer 2006. © 2006 American Cancer Society.

In localized prostate cancer, definitive therapy includes radical prostatectomy, external beam radiation, brachytherapy, and cryotherapy. Optimal treatment, however, is unknown because there is a lack of convincing evidence regarding which form of therapy offers the best long-term survival. Moreover, all forms of therapy have unique and potentially serious side effects. Indeed, despite at least one recent report,1 questions remain about whether the morbidities associated with radical prostatectomy are worth the small potential benefits in overall survival when compared with watchful waiting, especially for low- and intermediate-grade disease.2, 3 Ultimately, decisions about how to treat localized prostate cancer are highly personal. Ideally, each patient would base his decision on accurate information, weighing all options in terms of the likelihood for tumor recurrence, personal preferences for avoiding specific treatment-related side effects, and pragmatic considerations such as cost, convenience, and requirements for follow-up care.

Little is known about how men diagnosed with localized prostate carcinoma choose their treatment. Studies using hypothetical patients, retrospective data, or non-U.S. populations have examined discrete influences on and correlates of decision-making, such as social supports, informational sources, demographic characteristics, and concerns about side effects and posttreatment quality of life.4–19 Some of these studies have utilized focus group and individual patient interviews to aid in the development of surveys and psychometric instruments but most have asserted conclusions without reporting the content of the actual interviews. There is also a small literature based on testimonials of predominately white, socially privileged men that recount odysseys of receiving a prostate cancer diagnosis, agonizing over what to do, and traversing perplexing health care systems.20–22 Because the topic has not been adequately addressed in the prior literature this study aims to describe, from the perspective of working- and middle-class patients themselves, how they make treatment decisions in real time following the diagnosis of localized prostate carcinoma.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

Qualitative research methods are well-suited for studying the complex and dynamic experience of decision-making following a cancer diagnosis because they permit rich descriptions using the words and categories of participants themselves.23 When phenomena are poorly understood, qualitative methods aid in the identification of key variables and can generate informed hypotheses for evaluation in subsequent, quantitative studies. Qualitative methods can also furnish novel ideas about how to target the improvements in health services delivery.

Participants

Patients were identified through the Denver Veterans Affairs Medical Center Urology Outpatient Practice. Clinic personnel confirmed patient eligibility for the study. Criteria included men (≤80 years, English-speaking), with clinically localized (i.e. T1 or T2) prostate cancer, who had been diagnosed within the previous six weeks and had not yet received treatment.

Description of Setting and Procedures

We carried out individual patient interviews within a week of, and typically on the same day as, a patient's first treatment discussion with a urology resident. Four urology residents beyond their second year of training rotated through the service during the interview period. Each urologic consultation, lasting an average of 35 min, included a description of prostate cancer and the patient's unique tumor characteristics, a review of all major treatment options and their associated side effects, and prognostic information based on the Partin table.24 Available forms of treatment included radical prostatectomy, external beam radiotherapy, brachytherapy (an option that requires Veterans Affairs-paid travel to Seattle) and, as noncurative therapy, hormonal ablation and watchful waiting. Cryotherapy was also an option, usually referenced as ‘experimental,’ but was not available within the institution. All patients were given an informational brochure that summarized this basic information.25 Although clinical characteristics (e.g. patient age, PSA level, sexual activity, and comorbidities) were expected to influence the ways in which clinicians presented treatment options to patients, we did not study this phenomenon nor did we focus on the treatment options that might have been medically preferred given a patient's clinical profile. Instead, our goal was to characterize patients' attitudes and beliefs about the choices they actually faced as well as the strategies they used to decide on one form of treatment over another.

With three patients, we pilot-tested and refined a semistructured, in-depth interview that lasted between 60 and 90 min. An open-ended protocol allowed respondents to express themselves completely, in their own words, without the imposition of researcher-defined categories. The interviews, carried out by a medical anthropologist and qualitative research assistant, focused on the emotional repercussions of the diagnosis, perceived treatment options, treatment preferences and their rationale, knowledge of treatment-associated side effects, perceived changes in attitudes toward treatment before and after the urologic consultation, current and anticipated sources of information and advice, and perceptions of the urologist's treatment recommendations and advice about decision-making. Interviews were audio-taped and transcribed verbatim using numerical codes to protect patient identities. Researchers made no effort to influence treatment choices or judge their appropriateness. At the end of their first interview, patients were given $25 as compensation for their participation. The final sample size was dictated by thematic saturation, which refers to the point at which additional interviews replicate previously-identified themes and fail to reveal new findings. Chart reviews provided supplementary information about patient sociodemograpics, medical history, tumor characteristics, and urologist notations regarding their discussions with patients. Six to eight months after the initial interviews, we audio-taped and transcribed 10- to 15-min follow-up telephone interviews to reassess patients' reasons for choosing the form of treatment they ultimately received.

Data Analysis

Using grounded-theory methodology,26 the initial stage of data coding and interpretation involved two experienced qualitative researchers who carried out independent, methodical reviews of individual transcriptions in order to prepare summary documents of key thematic elements. Jointly, the investigators then reviewed these summaries along with the original transcriptions in order to produce consensus documents for each patient. This process involved comparing findings, discussing divergent coding, and resolving differences of interpretation when necessary. Finally, on the basis of the summary and consensus statements, the investigators used an iterative process to develop synopses of recurrent themes applicable to the entire sample.

This study was approved by the Colorado Multiple Institutional Review Board (COMIRB). In this study, informed Consent was obtained from All participants.

RESULTS

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

Participants

Thematic saturation was achieved with 20 participants. Table 1 summarizes their sociodemographic and medical characteristics, as well as treatment preferences and treatment received. Age of patients ranged from 54 to 80, with a mean of 65 years. Fifteen percent or 75% of patients were currently married; the remainder were widowed, divorced, never married, or had a noncohabiting partner. The majority of the sample (75%) was white; five (25%) were African-American. Educational attainment ranged from non-high-school to college graduates. All patients had intermediate grade, clinically localized prostate cancer. PSA scores ranged from 4.6 to 39.3, with a median score of 7.4. Common to most Veterans Administration populations, about half the patients had significant comorbidities. Nonetheless, all patients were eligible for at least two forms of potentially curative therapy meaning they had choices and faced treatment decisions. Below, we describe their initial treatment preferences and the factors that influenced these.

Table 1. Medical and Demographic Characteristics of Participants
Patient no.Age (years)MarriedEducationRace/ethnicityGleason scoreClinical stagePSAInitial Treatment preferenceTreatment received
  1. AA indicates African American; NLW, Non-Latino White; RP, radical prostatectomy; brachy, brachytherapy; EBT, external beam radiotherapy; HA, hormonal ablation; cryo, cryotherapy; ww, watchful waiting; “wants”, at the time of the follow-up interview, treatment has not yet been received and the patient's treatment preference is indicated.

155+Some HSNLW7T2b39.3RPRP
258Some collegeAA7T2b17.0RPRP
361HS graduateNLW7T2b7.1RPRP
463+HS graduateNLW7T1c7.8RP>EBTRP
564+College graduateNLW6T1c5.5RPRP
667+College graduateNLW6T1c6.7RPRP
769+Some collegeNLW6T1c7.2RPbrachy
874+College graduateNLW5T1c5.0RPRP
953+Some collegeAA6T1c12.0brachywants brachy
1057Some collegeNLW6T2b4.6brachyEBT, HA
1163+Some collegeNLW6T1c5.5brachybrachy
1257Some collegeAA6T2b5.3brachy>EBTEBT
1354Some collegeAA6T1c10.6EBT>brachyEBT
1458+HS graduateAA7T2b16.2EBTEBT, HA
1569+Some HSLatino6T1c20.7EBTHA
1670+Some collegeNLW7T2b7.5EBTEBT, HA
1777+Some collegeNLW6T2b5.3EBTEBT
1880+College graduateNLW6T2b9.7wwwants cryo
1974+College graduateNLW6T1c14.8unsure; ww possibleww
2069+College graduateNLW7T2b5.5alternative tx (“Protosel”)Alternative tx

Fear, Uncertainty, and a Desire for Rapid Treatment

For most patients, decision-making occurred within a very charged emotional context characterized by fear, uncertainty, and a desire for rapid treatment. After hearing news of the diagnosis, about two-thirds of patients acknowledged marked and persistent fear and uncertainty about the future. Patients younger than 70 were particularly likely to acknowledge fear (this applied to 13/16 such patients). Typically, expressions of fear were complemented at other times by its denial, seeming to reflect an internal dialogue aimed at convincing oneself that everything would be fine. Illustrative patient quotes are presented in Figure 1.

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Figure 1. Patient quotes illustrating fear, uncertainty, and a desire for rapid treatment.

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Almost all patients noted that prostate cancer tends to be slow-growing. Some patients mentioned that their own tumor characteristics, such as low histological grade, low PSA level, and negative bone and CT scans, were encouraging. Nonetheless, more than half the patients (12/20) advocated treatment as quickly as possible. Intellectual knowledge did little to attenuate feelings of fear and the desire for rapid treatment; at the most it seemed to offer only transient reassurance.

Attitudes and Misconceptions About Prostatectomy

Patients expressed their most unambiguous opinions about prostatectomy, specifically. For and against, these opinions were very polarized (Fig. 2). On the basis of such impressions, patients then evaluated other, much less familiar alternatives, including external beam radiotherapy, brachytherapy, and cryotherapy.

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Figure 2. Participant quotes regarding the advantages and disadvantages of prostatectomy.

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“Surgery is Best”

One group of patients (8/20, or 40%) felt surgery was the best option because it was the most certain, the most expeditious, and the most concrete and tangible. These patients believed that “getting the tumor out” was the most definitive thing one could do, that it offered the greatest sense of finality, and that it was the standard against which all other treatment options should be judged. For these patients, physically removing a cancerous tumor was simple common sense.

The ability of surgery to provide prompt knowledge about the tumor was also of paramount importance, because this could help alleviate uncertainty. Prostatectomy would yield the greatest amount of information about the nature and extent of the cancer itself, such as whether it had spread outside of prostate, possibly to involve the lymph nodes. Patients believed (erroneously) that if the excised tumor was wholly confined to the prostate, treatment success would be known and cure guaranteed, alleviating considerable doubt about the future. If, on the other hand, surgery were to reveal that tumor had escaped the prostate, this information would also be invaluable because, as one patient put it, “at least I will know what I'm dealing with.”

Without exception, patients who desired surgery did not regard external beam radiotherapy, brachytherapy, and cryotherapy as attractive alternatives. An underlying theme was that these forms of therapy act upon a cancerous organ that remains hidden and unseen within the body. Furthermore, external beam radiotherapy, in particular, requires a protracted course of administration and the success and side effects of this option, as well as brachytherapy, only become evident at some indeterminate point in the future. In other words, compared with surgery, these other forms of treatment are less immediate, less visible, and more mysterious and indefinite (Fig. 2).

“Surgery is Dreadful”

In contrast to those who desired surgery, a similar-sized group of patients (11/20, or 55%) had equally strong but negative feelings about this option. These feelings were based on the idea that surgery (or anesthesia) is intrinsically “frightening,” “drastic,” and “extreme”; that death on the operating table is a real possibility; and that it is undesirable to cede complete control over one's unconscious body to physicians who may not be completely trustworthy or competent. Some patients suggested that surgery is messy or haphazard, or even rife with carnage. Some mentioned that surgery can cause a tumor to spread, or that the removal of a body part is simply a bad idea. Some imagined, often in graphic terms, the worse possible outcomes associated with surgery (Fig. 2).

Patients who rejected prostatectomy were more likely to seriously consider alternatives. Among those who were in a position to choose, brachytherapy may have been somewhat more popular than external beam radiotherapy. Meanwhile, among patients who were ineligible for brachytherapy (e.g. because of a prior transurethral resection of the prostate or prostatic hypertrophy) external beam radiotherapy was accepted as a default option but without evident enthusiasm. No patients expressed an initial preference for cryotherapy. As primary disadvantages of external beam radiotherapy, patients cited its daily administration over six weeks and its perceived side effects. By contrast, the primary advantages of brachytherapy included convenience and minimal side effects (e.g. “it's like a prostate biopsy – a piece of cake, and you're good to go”). Two patients also mentioned that brachytherapy is “direct,” a term apparently gleaned from the notion that radioactive seeds are deposited “directly” into the prostate. “Directness” was associated with greater certainty of cure, in contrast to the uncertainty of external beam radiotherapy (e.g. “let's aim at this and hope we get it”).

Table 2 summarizes common knowledge deficits and mistaken ideas (misconceptions) about the risks and benefits of prostatectomy. These were prevalent among a majority of proponents and detractors of prostatectomy. It was noteworthy that, following news of the diagnosis but before their first urologic consultation, about half the patients (9/20) sought information about prostate cancer on the internet. These individuals, a majority of whom were college graduates, were just as likely as other patients to manifest misunderstandings and knowledge deficits about prostatectomy.

Table 2. Common and Influential Misconceptions About the Risks and Benefits of Prostatectomy
MisconceptionsFacts
Proponents of prostatectomy:
Physically removing a cancerous tumor is the best way to guarantee cure.Compared with prostatectomy, radiotherapy has similar, and occasionally  slightly better, five-year progression free probabilities.27
Rapid surgery is most advisable to avoid the possibility that the tumor will  ‘spread’ or suddenly metastasize (‘blossom’ or ‘explode’).Although external beam radiotherapy may be time-consuming, the likelihood  of transformation to rapidly progressive disease is remote and does not  justify immediate prostatectomy.28
Surgery abolishes uncertainty if the postsurgical evaluation shows that the  cancer is confined to the prostate.Possible micrometastases and local recurrence necessitate prolonged postprostatectomy PSA surveillance.29
If the tumor has spread beyond the prostate, this information also minimizes  uncertainty.Postsurgical evidence of capsular penetration or lymph-node involvement  raises uncertainty about giving radiation immediately for prevention or  later as salvage therapy.30
Detractors of prostatectomy:
Surgery/anesthesia is very dangerous and can lead to death. Surgery is  butchery.In eligible patients, prostatectomy/anesthesia is routine, highly structured,  sterile, and very safe.31
Surgery is painful and involves a prolonged recovery period.Postoperative recovery of usual daily functioning is fairly rapid, and there  are effective ways of managing postoperative pain.31
Unlike other options, surgery causes impotence.Long-term potency outcomes are similar with external beam radiotherapy.32
Surgery (or opening the tumor to air) can cause cancer to spread.Exposing prostate cancer to air does not cause it to spread.33

Failure to Weigh the Numerical Risks of Death and Treatment Side Effects

All urologists reviewed with patients the Partin table probabilities for organ-confined disease, extra-capsular extension, seminal vesicle and lymph node involvement, and lack of 5-year disease progression. Only one of the interviewed patients, however, explicitly compared surgery with its alternatives by referring to these numbers. Meanwhile, none of the patients explicitly compared treatments in terms of their relative likelihood of causing side effects. Although urologists did review the major side effects associated with each form of treatment, patients recalled this information poorly and inaccurately, even among those who had previously consulted the internet.

Several patients confused radiotherapy with chemotherapy, erroneously suggesting that the most common side effect of conformal beam radiotherapy is hair loss. Some patients, apparently having difficulty keeping track of the specific side effects associated with any one form of treatment, associated major side effects with every form of treatment without regard to their probability of occurrence. Finally, almost half the patients (9/20) minimized concerns about side effects altogether, deeming these entirely irrelevant to the decision-making process.

[Side effects] are not important compared to dying. So you know, the rest of it is immaterial. If I have to wear Depends the rest of my life, then so be it.

The Influence of Anecdote

Nineteen patients had observed or been told about the cancer experiences of others and then had used this information to make sense of their own situation. For example, one patient with localized, potentially curable disease compared his circumstances with that of a cousin whose disease was regionally advanced and hormone-refractory. These kinds of anecdotes exerted strong sway over patients' feelings about their own prostate cancer, treatment preferences, and perceived ability to tolerate particular side effects, primarily because patients viewed prostate cancer as a uniform entity, unaware of differences in prognosis based on tumor stage and grade. In the end, patients paid much more attention to anecdotes than to population-based risk information. The following patient, for example, invoked anecdote to justify his desire for prostatectomy:

Well, see what happened to my dad [who had prostate cancer], it didn't do him no good… He had the radiation and it went through his body anyway… But my brother just had his prostate removed last year and he is reading 0/0 on his count now and that was over a year now. So I like the results he got, so I feel that's what I'll do.

Avoiding Second Opinions

In 16/20 cases, interviewed patients said they did not intend to seek an independent second opinion or discuss treatment with another physician. The reasons generally reflected misconceptions about the purpose of second opinions, expressions of trust or faith in the urologist, and a desire to avoid additional delay, information overload, and prolonged uncertainty. A common misconception (5/20 patients) is that second opinions are only intended to confirm the diagnosis. A majority (6/8) of patients who desired prostatectomy made clear that a second opinion was unnecessary because they simply “trusted,” “had confidence in,” or “felt comfortable with” the urologist. Invariably, these patients referred to their perceptions of a urologist's personal qualities, such as directness and honesty, rather than a urologist's level of skill and experience or the pros and cons of different forms of treatment. Finally, 10/20 patients felt that second opinions would increase fear and anxiety, delay therapy, or add uncertainty to an already difficult situation.

Information Seeking and Processing

Two approaches seemed to predominate when it came to managing information about prostate cancer. About half of the patients (12/22) said that they wanted doctors or significant others to tell them what they needed to know, while the remainder (10/22) said that they were actively trying to collect and digest as many facts as possible. Among the patients who were reticent to gather information some seemed dissuaded by the unpleasantness of the topic.

I don't probe people to tell me all the details… I don't think no books or nothing like that would help me as far as reading about it because… it'd probably make me feel a little bit more insecure about it.

Another patient who was motivated initially to learn about his disease became discouraged by what he perceived to be confusing and contradictory advice.

Then I talked to these other people who have prostate surgery and they said that was the way to go. I talked to a couple of other people and they told me to take some kind of herbs and stuff, but I'm not listening to that. Someone else told me to go somewhere for some kind of treatment you know. When you listen to a lot of different people it's not good. It's not good.

Meanwhile, those for whom information seeking was important often observed that the process of assimilating it was uncertain, haphazard, and confusing.

I have a stack of papers over an inch thick probably, and I got some more today. Well, they all have differing opinions so you have to kind of read through that and you kind of try to sort it out the best way you can. I get my information mostly from doctors, hospitals, family and my own reading. …The pamphlets and stuff I've been given, or reading newspaper articles about other people, this and that. That's what I'm talking about – resources. Just hopping around.

In summary, contending with a large quantity of sometimes contradictory information and advice was a major concern of almost every patient.

Treatment Received and Posttreatment Interviews

In only 4/20 cases did a patient subsequently request or receive treatment that did not match his initial preference (see Table 1). We were able to reach 16/20 patients for follow-up interviews 6-8 months after treatment. Fourteen of these who received treatments consistent with their initial preferences invoked exactly the same justifications that they had used prior to treatment.

DISCUSSION

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

We carried out detailed interviews of 20 patients with localized prostate cancer while they were still contemplating treatment but before they had initiated it. We recorded salient aspects of their decision-making experiences in real time, thereby avoiding recall bias. To our knowledge, no previously-published studies have used this methodology. On the basis of thematic analysis, we elucidated three factors that exerted particularly strong influences on initial treatment preferences. The first was profound fear and uncertainty, often corresponding with a desire to receive treatment as quickly as possible. In fact, a majority of patients were uninterested in obtaining a second opinion, typically because of concerns that this would delay treatment and increase uncertainty. Also, several patients erroneously declared that the only purpose of a second opinion is to confirm a diagnosis. Second, most patients had influential misconceptions about treatment, especially prostatectomy. Their beliefs were highly polarized: one group of patients avowed that prostatectomy is the best way of guaranteeing cure while another group asserted that it is very drastic or dangerous. Finally, almost all patients relied on anecdotes—stories about other people's cancer experiences—to make sense of their own diagnosis and treatment choices. For the most part, these stories did not accurately match patients' own clinical circumstances.

Chart reviews and follow-up interviews revealed that most patients received treatments that matched their initial preferences. In addition, at the time of their follow-up interviews most patients invoked the same flawed ideas about prostate cancer and the same rationale for treatment that they had articulated during their initial interviews 6-8 months earlier. Although we were unable to directly determine the factors that actually influenced their final treatment choices, the persistence of these ideas bolsters our concern that many patients made early and quick decisions on the basis of erroneous and incomplete information, and then never changed their minds about treatment or altered the reasons for their choices. Altogether, these findings raise doubts about the quality of the decision-making process. Although the quality of an actual treatment decision in localized prostate carcinoma cannot, in general, be assessed in relation to an optimal form of treatment, the quality of the decision-making process is compromised when decisions are precipitous, and when they are based on significant misunderstandings and a lack of relevant knowledge.

Many of the patients we interviewed seemed as interested (and sometimes more so) in eliminating fear and minimizing uncertainty over the short term as they were in realizing cure over the longer-term. Even though most patients volunteered that prostate cancer is “slow growing,” this abstract knowledge did little to dispel the vividly frightening, yet unlikely prospect of prostate cancer suddenly “exploding.” Patients remained anxious and wanted to proceed with treatment as quickly as possible. Fear of death was much more prominent than fear of treatment side effects—to such an extent, in fact, that almost half the patients discounted concerns about treatment side effects altogether. In comparison with the possibility of death (which was greatly exaggerated), side effects were simply irrelevant. Another source of fear, again among nearly half the patients, was lack of definitive knowledge about the nature of the tumor. These patients believed—erroneously—that surgery furnishes the greatest amount of clinically useful knowledge and allows one to know quickly and with certainty whether cure has been achieved. Among a separate group of patients, on the other hand, prostatectomy induced fear because its dangers were magnified out of proportion to its real risks. In summary, although fear is to be expected and may be necessary for motivating serious deliberation and action, it overpowered reason in ways that were not rectified through the simple provision of accurate health information.

In the decision science literature, an early, primitive reaction to almost any personally relevant object or event is a dichotomous good-bad evaluative assessment. Such a reaction may help to winnow down large choice sets into smaller numbers of options that are more easily contemplated.34 Polarized attitudes for and against surgery may exemplify this phenomenon. Patients' first and most important step in weighing treatment alternatives seemed to depend on their beliefs about the intrinsic merits and disadvantages of prostatectomy, specifically. Assessments of prostatectomy, however, were often based on powerful misconceptions (see Table 2). Misconceptions about cancer are common and often go unrecognized even though they may exert a profound effect on patient behavior.35, 36 Although urologists (as in this study) typically present patients with factual information that, in principle, might correct their misconceptions, it is likely that patients often fail to recognize that such information is inconsistent with their preexisting beliefs. In this way, their misconceptions persist. Alternatively, they may simply choose to discount such information.37

When making treatment recommendations, physicians often rely on personal opinion and anecdote more than on high-quality evidence.38 It is unsurprising that patients also rely frequently on anecdotal reasoning rather than statistical information.39, 40 In this study, the vast majority of patients reported the influence of anecdote when forming treatment preferences. In adversity, patients seek advice from other people who are known or trusted and who have lived through seemingly similar situations. This is the basis of support groups and is a key way of garnering emotional and practical assistance from others. Anecdotal information is especially important when it provides appropriate reassurance about particular forms of treatment (e.g. that most patients, in fact, do well with prostatectomy). Conversely, anecdotal information impairs decision-making quality when it leads patients to ignore treatment alternatives or make decisions based on inaccurate appraisals of their own clinical circumstances.41

In recent years, the literature on patient-centered decision-making has emphasized the importance of informed decision-making (IDM) and, to a somewhat lesser degree, shared decision-making (SDM).42–45 IDM in prostate cancer occurs when a patient understands the nature of the disease, the risks and benefits of various treatment alternatives, and makes a decision consistent with his values and outcome preferences. SDM is an extension of IDM in which the clinician assumes an active role in helping the patient to clarify and express his values and preferences, proposes a form of treatment that seems to be most consistent with the patient's values and preferences, and collaborates with the patient to arrive at a mutually satisfactory treatment decision. Both IDM and SDM emphasize the centrality of communicating medical information to patients and encouraging patients to clarify their values and preferences in ways that can be represented as declarative facts. Also, IDM and SDM tend to emphasize the presentation and framing of numerical risk information in ways that patients can easily and correctly interpret.46, 47

This study illustrates that although attention to health information, outcome preferences, and the framing of numerical risk is necessary, it is hardly sufficient for achieving quality in patient-centered decision-making. In particular, traditional models of IDM and SDM often give short shrift to the three powerful influences on decision-making that we identified here. First, emotions such as fear and anxiety engender a profound desire for rapid treatment that is not alleviated by intellectual knowledge that prostate cancer, for example, is “slow growing.” Second, influential misconceptions about cancer and treatment are commonplace and are not easily redressed by simply imparting accurate health information. Finally, there is a natural propensity to base personal decisions on anecdotal information, even when anecdotes are not germane to patients' own circumstances. In emphasizing the importance of rational decision-making, IDM and SDM approaches implicitly stress how patients “should” behave while often overlooking how they, in fact, do behave.

To address these challenges, clinicians should strive to meet patients closer to where they actually begin the decision-making process. Explicitly describing common misconceptions may allow patients to consciously recognize and correct them. Sources of patient fear can be elucidated and, where possible, reassurance can be offered. Patients can be asked to recount stories about other people that influence their attitudes and perceptions about prostate cancer, or can be connected to other individuals who have faced similar decisions in the face of comparable risk. Then, they can be helped to understand key differences between these stories and their own circumstances. Finally, the potential value of obtaining second opinions can be made clearer.

In future work, we plan to incorporate these recommendations into treatment decision-aids. Because we found that patients tended to be either passive information recipients or active information seekers,48 we plan to tailor decision-aid content not only to a patient's clinical characteristics but to his preferences for handling and processing information. In comparison with usual care, we expect that such a decision-aid will lead to less precipitous and more personally satisfactory decisions, fewer treatment alternatives excluded on the basis of erroneous information, greater mutability in treatment preferences over time, and an enhanced ability to critically assess the relevance of other people's experiences with prostate cancer.

Limitations

This was a cross-sectional study of a small number of patients in a single Veterans Affairs Medical Center where, compared with the general population, patients tend to have poorer health and fewer socioeconomic resources.49 In addition, patients in this study consulted with resident rather than attending urologists. Conversely, we included an age- and educationally diverse patient sample (including college graduates) and, for the first time, carried out comprehensive interviews during the actual decision-making period as well as 6 to 8 months following the treatment. Ultimately, we believe that the decision-making themes we have identified are likely to have universal applicability.

CONCLUSIONS

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

Promoting patient participation in treatment decisions requires more than the provision of medical information and the elicitation and weighing of outcome preferences. The process requires greater sensitivity to the factors that, for most patients, actually influence treatment preferences. These include fear, uncertainty, misconceptions, and anecdote.

Acknowledgements

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES

We acknowledge the editorial assistance of Richard Hoffman, MD, MPH (University of New Mexico, Division of General Internal Medicine). In addition, Robert Donohue, MD (Department of Urology, University of Colorado at Denver and Health Sciences Center and Denver Veterans Affairs Medical Center) helped to facilitate the patient interviews.

REFERENCES

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. CONCLUSIONS
  7. Acknowledgements
  8. REFERENCES