Davison, B. Joyce PhD, RN; Breckon, Erin Nicole BA(Hons)
Prostate cancer (PC) remains the most commonly diagnosed nonskin malignancy and third most common cause of male cancer-related deaths in North America.1,2 Approximately 25 500 cases of PC were diagnosed in Canada in 2011.2 Prostate cancer is unique in that no other disease condition with a comparably high incidence rate has so many available treatment alternatives, yet so few certainties related to outcome. Consequently, physicians and patients continue to make treatment decisions based on personal biases as no long-term randomized clinical trial data compare the efficacy of treatment options.3,4 The distress experienced by patients at the time of diagnosis along with the complexity of choosing a treatment option contributes to a decision-making process that is often extremely difficult and fraught with anxiety.5
Researchers have demonstrated that men with newly diagnosed PC do want to be informed6–8 and involved in the treatment decision making (TDM) process with their physician.9,10 However, physicians continue to underestimate the degree to which patients wish to participate in TDM.11 In addition, patients and healthcare professionals often differ in opinion regarding the type and amount of information required to make an informed decision.10,12–16 Physicians continue to provide information using a standard approach developed through years of clinical practice, even though several studies suggest that an individualized approach is optimal.6,7,9 This standardized approach misses the goal of providing patient-centered care, and time is often wasted offering more detail than many patients want or need. Subsequently, PC patients continue to have unmet information needs, and a significant proportion of patients are not satisfied with their ability to communicate with physicians about PC and available treatments.17 Moreover, a growing body of evidence indicates that men with PC engage in the TDM process by considering their personal characteristics and factors that may be much more influential than any medical factor.7,18–22
Health Information–Seeking Behavior
Seeking information is the most basic, frequent, and earliest method used to cope with a stressful life event (such as a PC diagnosis) about which information is limited. Information seeking is conceptualized as a form of cognitive control because it often results in an individual being able to interpret the aversive event in a way that lessens threat and contributes to a sense of personal control. The amount and detail of information an individual wants and their preference for a particular role in TDM are often dependent on the individual’s perception and evaluation of the situation, personal and situational factors, and the continuous interaction between the individual and his environment.23 Theory on how an individual copes with a threatening situation asserts that there are 2 basic modes of coping: “repression” or “cognitive avoidance,” defined as an orientation away from threatening situations, and “sensitization” or “vigilance,” defined as an orientation toward threat.24 However, this dichotomous view does not take into account individual variation. An information gap continues to exist between what PC patients wish to know and the information they actually receive from their physicians.15
Lambert et al13,14 identified health information–seeking behavior (HISB) patterns from a grounded theory perspective. Thirty individual interviews and 8 focus groups (n = 31) were conducted with patients with a diagnosis of with breast, prostate, or colorectal cancer. Twelve men with PC participated in individual interviews and 11 in focus groups. Overall, 5 patterns of health information seeking were identified from the patient interviews: (1) intense (having a keen interest in detailed cancer information), (2) complementary (process of getting “good enough” cancer information), (3) fortuitous (search for cancer information mainly from others with a diagnosis of cancer), (4) minimal (a limited interest for cancer information), and (5) guarded (avoidance of some cancer information). Among the PC group (unpublished data), 26% identified as being “intense” information seekers, 17% “ complementary,” 21% “fortuitous,” 30% “minimal,” and 6% “guarded.” Being younger with a university education was suggestive of being an intense information seeker. As approximately 86% of these patients were at greater than 1 year from the time of diagnosis, and 69% had radiation treatment, determining if these 5 patterns of HISB applied to a group of PC patients at the time of diagnosis was seen as a necessary step.
Factors Influencing TDM
In a systematic review (1990–2005) on PC decision making, Zeliadt et al25 reported that men consider several issues when making a treatment decision. Cancer control remains the most important issue for nearly all patients. However, the importance that men place on cancer eradication varies with how they interpret evidence regarding treatment efficacy. Patients continue to grossly underestimate their life expectancy without treatment and grossly overestimate the survival benefit of treatment.26 Treatment-related adverse effects also play a significant role in TDM, but information regarding how men weigh the adverse effects in TDM is limited. Although sexual function is rated as important by the majority of men younger than 60 years and 79% of men 75 years or older, the importance of sexual function on treatment choice varies in the literature. Urinary incontinence appears to have a significant influence on approximately half of the patients. Fear of complications associated with procedures such as surgical complications, burns from radiation, and longer recovery times also has been shown to have an influence on treatment choice19,22,27,28 due to the impact on ability to work.19,29 Overall, dramatic variation exists among men concerning willingness to accept therapy-induced long-term symptoms.30
Feelings of fear and uncertainty, anecdotes of other men’s experiences with cancer-specific treatments, and misconceptions about the efficacy of treatment are common occurrences at the time of a PC diagnosis.31 The common myths about PC and its therapies on treatment choice must be determined to help patients avoid overreliance on other patients’ experiences. The influence of family, friends, personal values, and role of race/ethnicity or socioeconomic status on decision making remains largely understudied.
Although more physicians are trying to pass on decisional responsibility to patients, patients continue to rely on their physician’s recommendations.32 Information from the physician is considered the most important factor in reaching a treatment decision by more than half of the patients, and it is not uncommon for patients to seek information from 2 or 3 physicians.19,27,33–36 A bias in treatment preference by specialty continues to have a direct influence on treatment choice,12,37–39 even though treatment preferences of the patients are often different than those of their physician.12
Patient involvement in medical decision making has gained attention during the last 2 decades, but assessment of patients’ preferred roles in TDM is an area that remains largely unexplored by physicians in practice.40 Prostate cancer treatment decisions are ideal for the study of decision control preferences given the high incidence and uncertainty related to treatment outcomes. Responsibility for a treatment decision between a patient and healthcare specialist can range from benevolent paternalism, to a fully interactional model, to a scenario where the specialist simply provides or transfers information and the decision is solely left to the patient. A diagnosis of PC initiates a cascade of events in which a man faces a treatment decision of great importance where there is no “right” answer. Approximately 60% of men report assuming their preferred level of decision control, 30% assume a more active role than originally preferred, and 10% assume a less active role than originally preferred.41,42 Clearly, a patient’s preferred role in TDM should be taken into consideration at the time of diagnosis, given that 40% of these men assume a role that is not consistent with their preferred role. Past research conducted by Davison and colleagues9,41,42 consistently shows that the majority of men report assuming a more active role in TDM than originally preferred subsequent to some form of information intervention.
The optimal treatment for PC depends on both the clinical scenario (patient age and tumor aggressiveness) and the patient’s preference. Age and stage of cancer tend to be the most important variables having an influence on the degree of control men wish to have over treatment choice. For example, compared with older patients with advanced disease, younger men (<65 years of age) more often report a preference for playing an active role in TDM.43,44 Younger men also report being least content when they have not been involved in TDM. There is also a trend for younger43 and well-informed men to have a preference for greater involvement in TDM.9,41,42
The purpose of this project was to determine the impact of HISB and personal factors on the preferred role in TDM.
Population and Setting
The sample consisted of patients with newly diagnosed PC seen at 2 community outpatient urology clinics in Western Canada. Urologists diagnose PC and provide the initial treatment consultation in these 2 provinces. Only patients who express an interest in radiation treatment are referred to a radiation oncologist for further treatment discussion. Inclusion criteria included patients who had a confirmed diagnosis of PC as per biopsy result, were within 2 to 4 months from time of being informed about their positive biopsy results, were aware of their diagnosis of PC, had not received treatment, were able to communicate fluently in English, and did not demonstrate any evidence of cognitive impairment as assessed by their attending physician.
A survey questionnaire consisting of the following 5 parts was used in this study:
1. Demographic information: Data were collected on both personal (age, education, marital status, ethnicity, and income) and disease-specific information (diagnosis confirmation, prostate-specific antigen, Gleason score, and clinical stage).
2. Health information–seeking behavior: Five different HISB profiles as identified by Lambert et al13,14 were used to identify HISB (intense, complementary, fortuitous, minimal, or guarded information-seeking behavior). Descriptive paragraphs of each pattern were used to determine each participant’s preferred HISB pattern. Patients were asked to select the pattern that best described how they wished to receive information to help them make a treatment decision.
3. Sources of information: This section asked patients to select the types of information resources they would like to access (eg, journals, books, Internet sites, brochures, etc).
4. Decision control: Three statements were used to measure the degree of control men wished to have in making a treatment choice with their urologist. The 3 statements included (a) I prefer to make the final treatment choice after seriously considering my urologist’s opinion about which treatment would be best for me (active); (b) I prefer that my urologist and I make the decision together (collaborative or shared); and (c) I prefer that my urologist decides what would be the best treatment for me after he seriously considers my opinion (passive).
5. Personal factors influencing treatment choice: Participants were asked to rate the importance of factors having an influence on their treatment choice. The 9 factors were identified in the literature review conducted by Zeliadt et al25 and based on the clinical experience of the first author who has worked with this patient population for the past 15 years. The 9 categories included measuring the impact of treatment on survival, urinary function, sexual function, bowel function, and work and leisure activities; the invasiveness of treatment options; the impact of a friend’s or acquaintance’s experience with a specific treatment; the specialist’s treatment recommendation; and the spouse’s or family member’s opinion.
The 9 items were arranged in subsets of 2 using Ross’s45 matrix of optimal ordering. Ross’s45 method ensured that the maximum spacing for the maximum number of items was obtained to avoid selection bias. Participants were asked to select out of each pair (36 pairs) the one statement that described the factor having the most influence on his treatment decision at that time. This methodology was chosen to prevent the ceiling effect that often occurs with Likert scales.
Following ethical review, patients who met the study criteria were recruited into this study between April 2010 and May 2011. Names of eligible patients were provided to the research team by the attending urologists. Following informed consent, patients were asked to complete the survey questionnaire in the clinic. Patients who did not have time to complete the survey questionnaire in the clinic were asked to complete the form and return it by mail. It took approximately 20 minutes for men to complete the questionnaire.
Descriptive statistics such as means and SDs were used to summarize the sociodemographic and disease-related data. P = .05 was used to test for significance in all analyses. A χ2 test was used to determine if a relationship existed between preferred level of decision control (active, collaborative, or passive) and HISB (5 scenarios).
Profiles of factors having an influence on preferred role in TDM and the influence of age and education on these profiles were examined using a paired-comparison approach where each item was compared with the remaining items, one at a time. In each pair, the proportion of times 1 item was preferred over the other was recorded and converted to a z value. The baseline of 0.50 corresponded to a z value of 0, so proportions exceeding 0.50 had positive z values. The z values for the comparisons of 1 item against each of the other items was then summed and averaged; the resulting averages were assumed to have an interval scale. By a simple ranking of the average z values, a “profile” of items from most to least important was constructed. For a more complete description, please refer to Streiner and Norman.46
A total of 200 men were asked to participate in this study, and 150 (75%) men consented. The main reasons for refusal related to not being interested in participating in research and not wanting to fill out forms. The mean age of the participants was 63.5 (SD, 6.8) years. The majority of the participants were white, had greater than a grade 12 education, had a partner, and had localized disease. The personal and disease-specific characteristics of the participants at both sites were similar. Table 1 presents the demographic and clinical characteristics of the full study population.
Preferred Role in TDM
Fifty-seven participants (38%) had a preference to play an active role in TDM with their urologist; 79 (52.7%), a collaborative or shared role; and 14 (9.3%), a passive role. The majority of men (58.7%)had made a preliminary treatment decision to have a radical prostatectomy at the time of survey completion. Other treatment selections included active surveillance (16%), brachytherapy (14%), external beam radiation (6%), and cryosurgery (0.7%). A significantly (χ2 = 10.22, P = .037) higher proportion of men with low-risk disease preferred to play a collaborative role in TDM compared with men with medium- or high-risk disease. Level of education and marital status were not found to have a significant influence on preferred role in TDM with the urologist. However, being younger was found to have a significant (F = 3.87, P = .023) influence on men’s preference to play an active role in TDM with their urologist. Men who preferred an active role were, on average, 62.3 (SD, 6.4) years of age; collaborative, 63.5 (SD, 6.9) years; and passive, 67.9 (SD, 6.3) years. No significant associations were found to link preferred role and types of resources patients wished to access to help them make a decision.
Health Information–Seeking Behavior
The majority of the participants reported a preference for either an intense (52%) or complementary (38%) HISB. Men with a university degree were more likely (χ2 = 27.95, P = .03) to prefer an intense HISB compared with the other HISB categories. However, marital status and mean age were not found to be associated with preferred HISB.
A higher proportion of patients who had a preference for an intense HISB were also shown to want access to more (χ2 = 58.34, P = .03) information resources compared with patients in the other HISB categories. The majority of patients (73%) in the intense category wanted access to 3 to 6 types of resources, whereas the majority of patients in the complementary category wanted access to 2 to 3 types of information resources. The top categories of the overall study group’s preferred information resources included Internet sites (74%), general brochures about PC and treatment options (57.3%), talking to other patients who have been treated for PC (56.0%), having access to medical journals (31.3%), complementary medicine (31.3%), and information about how to access support groups (18.7%). A minority of patients (8.7%) were interested in group education sessions.
Association Between Health Information Seeking–Behavior and Preferred Role in TDM
The majority of patients (90.7%) reported a preference for either an active or collaborative role in TDM, and 90% had a preference for an intense or complementary HISB. Of these, only 9% of those who preferred a passive role in TDM preferred a high HISB. Similarly, only 10% of those patients who preferred a lower HISB reported preferring to play an active or collaborative role in TDM. Because 82% of patients reported preferring both a high HISB and high TDM, the resultant distribution was too skewed to conduct an analysis using the χ2 statistic (Table 2).
Association Between Personal Factors and Preferred Role in TDM
The 3 main factors reported by men as having the most influence on their treatment decision included the impact of treatment on both survival and urinary function and the urologist’s recommendation. The remaining factors have been arranged in hierarchical order based on the participant’s z scores in Table 3. No additional factors were identified by participants on the questionnaire as having an influence on their impending treatment decision. The top 5 factors common to all preferred roles were survival, impact of treatment on both urinary and bowel function, urologist’s recommendation, and invasiveness of procedure. Whereas men who preferred an active or collaborative role ranked survival as the most important factor having an influence on their treatment decision, men who preferred a passive role ranked the urologist’s recommendation as the most important.
The 5 factors identified in the previous section also were the same based on the level of education (≤high school, college, or university) and in those men aged 61 to 70 years and greater than 70 years. However, the profiles of patients who were 60 years or younger were more concerned with the impact of treatment on work and leisure activities than invasiveness of procedure. The impact of treatment on sexual function also declined with age category and was ranked as least important by the group of men older than 71 years, seventh in importance by men 61 to 70 years of age, and sixth by men 60 years or younger.
The results of this study reinforce previous findings that the majority of men with newly diagnosed PC do want to be involved in TDM with their physicians and that they want to be informed. The majority of patients who had a preference for higher levels of involvement in TDM with their physician also were shown to have a preference for an intense or complementary HISB. These findings add a new piece of knowledge to the literature in decision making.
The majority of men (90%) in our study reported having a preference to play either an “active” or “collaborative” (shared) role in TDM with their urologist. This finding is similar to previous work conducted by Davison and colleagues7,41,42,47 over the past several years. Being younger and having low risk disease was also found to be associated with patients wanting to play an active role in medical decision making. Although surgery was identified as the preferred treatment at the time of diagnosis by approximately 60% of this sample, 20% had a preference for radiation therapy and 16% active surveillance. This latter finding demonstrates that more men are aware of active surveillance as a treatment option for low-risk PC. When considering quality of life benefits, active surveillance does provide patients with a means of delaying or avoiding the occurrence of adverse effects associated with radical treatment48 without detriment to long-term survival.48 However, this treatment option is still relatively new and many physicians are not supportive of it especially in younger men with low-risk disease.
The majority (90%) of patients in this study preferred either an intense or complementary HISB. This finding is in contrast to Lambert’s findings (unpublished data) where 26% identified as being intense information seekers, 17% complementary, 21% fortuitous, 30% minimal, and 6% guarded. Since the majority (86%) of PC patients in Lambert’s study were greater than one year from the time of diagnosis and had already received treatment, we believe our finding suggests that HISB may be associated with the time point that the patient is in his illness trajectory. Being nearer to the time of diagnosis and not having made a treatment decision may be the factor that results in men wanting to access more information. Both this study and Lambert’s unpublished data did support the finding that younger men with higher levels of education have a preference for an intense HISB.
Men who had a preference for an intense or complementary HISB also wanted access to a larger number of information resources to help them make a treatment decision compared with men in the other HISB categories. However, the types of resources they wished to access varied according to the individual patient. Few (15%) men in our study wanted minimal or no information to help them make a treatment decision. The number of resources patients wanted to access was also reflective of the HISB selected. For example, the majority (73%) of patients in the intense category wanted access to 3 to 6 types of resources, whereas the majority of patients in the complementary category wanted access to 2 to 3 types of information resources. This finding demonstrates that although HISB can predict the amount of information patients want to access, it cannot predict the types of resources individuals wish to access. Feldman et al16,49 also reported that the information needs of patients with early-stage PC are largely based on the preferences of the individual patient. It is therefore imperative that patients are provided with a choice in the types of resources they wish to access.
The preferred HISB was not found to be associated with the preferred role in TDM. One explanation for this finding is that the majority of patients (82%) in this study had a preference for playing either an active or collaborative role in TDM and having either an intense or complementary HISB. Only 8% of patients who had a preference for a passive role in TDM chose an intense or complementary HISB. This latter finding suggests that although a minority of patients wants their physician to make the final treatment decision, we cannot assume that they are not interested in having access to information resources. Feldman et al16 also reported that the most frequent reason for wanting information deemed as essential was for understanding, followed by decision making and then planning.
The profiles of factors having an influence on the treatment decision were not found to differ according to the preferred role in TDM. This finding suggests that regardless of preferred role in making that decision, these men have common concerns about what is important to them in making a treatment decision. The 3 main factors reported by men as having the most influence on their treatment decision included the impact of treatment on both survival and urinary function and the urologist’s recommendation. Similarly, in a systematic review (1990–2005) on PC decision making, Zeliadt et al25 reported that survival or control of the cancer remains the most important issue for nearly all patients. Treatment-related adverse effects also play a significant role in TDM. Urinary incontinence appears to have a significant influence on approximately half of the patients in the treatment deliberation.25 One explanation for this is that having urinary incontinence does impact on quality of life in a visible way. Although sexual function was rated as more important by men younger than 60 years, the importance of sexual function on treatment choice varies in the literature,25 and most men prefer to deal with this issue after treatment.
Patients continue to rely on their physician’s treatment recommendation.32 Information from the physician is considered the most important factor in reaching a treatment decision by more than half of the patients, and it is not uncommon for patients to seek information from more than 1 specialist.19,27,33–36 However, a bias in recommended treatment continues to exist based on the specialist who is consulted first.12,37–39 The results of our study do not support the findings of Berry et al,18 who reported that the majority (45%) of men with localized PC relied heavily on the influence of another’s opinion or history to make a treatment decision, with only 22.7% relying on the physician’s opinion. One explanation for this difference is that the patients in the study of Berry et al were further from the time of diagnosis and that they may have already made a treatment decision. We believe that the nearer the patient is to the time of diagnosis, the more reliant he may be on the physician’s opinion because of the newness of the illness experience.
There were several limitations identified in the conduct of this study. First, the results are generalizable only to newly diagnosed patients seen at 2 urology clinics in Western Canada. However, we believe that the sample was representative of patients seen in these 2 Canadian provinces as both urology clinics are provincial referral sites and practices are similar. Second, the high education levels of this patient cohort and lack of ethnic diversity support the need to replicate this study to include patients from various cultures and with lower levels of education. Third, the survey used in this study was newly developed and had not been validated. However, it was based on previous work conducted by Davison and colleagues over the past several years in decision making and information preferences and the qualitative work of Lambert et al13,14 in HISB. The next phase of this research program will establish reliability of the instrument with a larger sample size within the context of a randomized clinical trial. Fourth, the cross-sectional design only made it possible to examine our study variables at 1 time point. However, this is the time point that assessment of patient preferences is necessary to assess and develop interventions to meet the patients’ needs.
Results from this study can provide guidance to oncology nurses in their counseling sessions with men with newly diagnosed PC. It is important for nurses to ask patients how they would like to participate in making treatment decisions with their physicians and to identify the type(s) and amount of information they wish to have to help make that decision. The 3 statements of decision control could be used in the clinical setting to identify patients’ preferred roles in decision making. A list of the 9 factors used in this study could also be used by nurses in their education sessions to help men identify the factors having the most influence on their treatment choice. Although the majority of men in this study wanted to be actively involved in decision making and having access to information, there were a few men where these findings did not apply. Therefore, an individualized approach to provision of information remains the preferred method.
The next step in this research program is to convert the paper survey used in this study into an Internet-based program entitled “Decision Support Intervention—Prostate Cancer.” This program will provide clinicians with the immediate feedback they require to counsel patients at the time of diagnosis. Newly diagnosed patients will be able to complete this program at home or at the clinic (if they do not have Internet access). The patient’s responses will be printed on a 1-page summary sheet that both nurses and physicians can use to help guide treatment discussions.
Prostate cancer is a widespread disease, and the potential benefits of being able to conduct an individualized assessment of personal preferences at the time of diagnosis are of great importance in the clinical area. Men do not usually have access to all the information they need to make a treatment decision or the means to identify and incorporate their personal preferences into their decisions. Being able to identify a patient’s HISB, preferred role in TDM, personal factors having an influence on their TDM, and types of information resources they want to access could certainly be used to guide patient education sessions and to facilitate patient physician communication at the time of diagnosis.
The authors thank the following urologists who provided access to their patients for this study: Larry Goldenberg, Martin Gleave, Alan So, and Kishore Visvanathan; and Dr Jonathan Berkowitz for his statistical analysis. They also thank Catrina Webster for her assistance in data collection.
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