Introduction
Men with newly diagnosed localized prostate cancer face challenging treatment decisions. Surgery and radiation therapy are effective treatments, but each has different quality of life implications for men and their partners. These treatments, although potentially life-saving, impose their own burden related to treatment side effects. Some men may benefit from a monitoring approach called “active surveillance” if they have early, slow-growing prostate cancer. Making the right treatment choice depends of men being given all appropriate options and making sure they have a high-quality conversation with their specialist. This process creates substantial cognitive and emotional burden. Identifying a course of treatment that accords with patient goals and preferences for cancer control while attending to important quality of life trade-offs is crucial to minimizing the overall burden of the prostate cancer. Thus, prostate cancer treatment provides a crucial opportunity for patients and clinicians to engage in shared decision-making.
Prostate cancer disproportionately affects African-American (AA) men. Previous studies suggest that AA men have a higher incidence of more aggressive or advanced stage prostate cancer and cancer-specific mortality compared to the general population. [
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4] American Indian men from the Northern and Southern Plains also experience disparities in prostate cancer stage and survival comparable to AA men; prostate cancer is also the second leading cause of cancer-related mortality in American Indian men overall. [
5,
6] Historically, AA men are less likely to receive radiation therapy or undergo surgery, and more likely to receive “watchful waiting” or active surveillance, despite having a higher incidence of intermediate and high-risk prostate cancer. [
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13] Minority men who undergo definitive therapy are more likely to experience treatment regret and greater functional outcome burden. [
14,
15] Although little research has been dedicated to treatment variation in American Indian men, a recent report suggested that this underserved population also has lower rates of definitive treatment following a diagnosis of prostate cancer. [
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American Indian and Alaska Native (AI/AN) men experience greater prostate cancer mortality than non-Hispanic whites. [
6] In Hispanic/Latino men disparities are less clear. In general, although national data do not suggest major outcome disparities in this group, local and regional studies and patterns-of-care studies review pockets of disparities particularly related to delays in care or different treatment patterns for Hispanic/Latino men. [
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Minority men in general experience disparities in prostate cancer knowledge and care patterns, and they suffer from more functional outcome morbidity in prostate cancer. [
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4] Combined, these disparities compound known disease burden differences in these populations. Studies have documented lower levels of knowledge about prostate cancer among AA men compared with other racial/ethnic groups. [
23] Poorer outcomes among minority prostate cancer patients may arise from factors beyond healthcare access. Worse functional outcomes result from overly aggressive treatment, while worse mortality outcomes likely result from under-aggressive treatment. On the one hand greater use of aggressive therapies could save lives, but could at the same time exacerbate existing disparities in functional outcomes associated with aggressive therapy.
Disparities also may be rooted, at least in part, in preference-discordant treatment choices stemming from poor communication between physicians and their minority patients. Shared decision-making (SDM) may be especially difficult to achieve when patients’ literacy and culturally mediated values challenge the biomedical establishment’s attempts to communicate the complexity surrounding modern treatment choices. In addition to myriad patient and health system factors including no/under insurance, ability to get insurance coverage, access to health care services, access to second opinions, and the influence of common comorbid health conditions, communication breakdown (failure to achieve SDM) may compound racial/ethnic disparities in treatment outcomes.
Decision aids have been shown to improve shared decision-making in a growing variety of clinical decisions. [
24] Decision aids vary from information-centric tools designed to help patients self-educate about benefits and burdens of treatment choices, to more visually oriented “conversation pieces” that foster and facilitate preference-sensitive conversation between patient and physician. [
25] Shared decision-making tools may enable deliberation about treatment choices in contexts where cultural differences and social determinants of health complicate fully ascertaining patient preferences. Thus, meaningful progress in addressing racial disparities in prostate cancer treatment may be possible by facilitating shared decision-making through the use of decision aids.
Because choosing the right treatment in prostate cancer is so challenging, it requires high quality conversations. Because communication breakdowns may be to blame for documented disparities in the provision of prostate cancer treatments to minorities—particularly African American and American Indian men—we designed this study to test known methods of improving conversations between clinicians and patients in a trial that seeks to preferentially enroll minority men confronted with a new diagnosis of prostate cancer. The overall goal of our trial is to test the comparative effectiveness of two decision aids—an information-rich decision aid tool (Knowing Your Options) delivered before specialist consultation and a conversation-facilitating decision aid tool with fewer details (Prostate Choice) delivered during specialist consultation—in a four-arm trial testing each decision aid alone and in combination compared to usual care. Patient knowledge about prostate cancer treatments will be our primary outcome measured immediately after the index consultation with a urology specialist. We will oversample minority populations to determine whether the decision aids mitigate disparities across race/ethnic groups in their measured knowledge of prostate cancer and its treatments.
Discussion
Preference-sensitive decisions involve uncertainty about net outcome benefit, making patient values and preferences paramount in the treatment decision. [
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41] Because of the lack of clinical trial data suggesting a superior initial active prostate cancer therapy, physicians should help their patients successfully deliberate about the quality of life implications and burdens of different primary treatments to reach a decision that embodies the principles of shared decision-making (SDM). SDM is a model of evidence disclosure and values elicitation intended for preference-sensitive decisions and is endorsed by all major professional societies. [
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By incorporating decision aids into the patient experience of receiving clinical guidance and treatment for prostate cancer, we may make critical progress toward shared decision-making in urologic oncology, especially in those patients whose cultural affinities add complexity to effective communication between provider and patient. Decision aids that are sensitive to cultural norms and that enable patient-driven conversation about treatment options for prostate cancer may hold one of the keys to reducing known disparities in prostate cancer treatment and outcomes. At the conclusion of our trial, we will have data showing the impact of decisions aids on patient knowledge in a sample enriched with minority men with new diagnoses of prostate cancer.