Empowering Patients as Decision Makers in the Context of Early Stage Prostate Cancer

Patients with early stage prostate cancer face a difficult preference-sensitive decision. There are multiple treatment options, each of which is associated with a unique set of benefits and risks. For example, surgery may cure the cancer but also come with the risk of serious side effects, such as impotence and incontinence. Alternatively, active surveillance avoids those side effects but requires patients to live with an untreated cancer inside their body. The optimal treatment for each patient will thus depend not only on his medical characteristics but also on how he personally values those risks and benefits. Ideally, patients and their physicians would partner together in a process of shared decision making (SDM) to ensure that patients receive treatments that reflect their personal preferences (i.e., preference-concordant treatments). In this dissertation, I use both qualitative and quantitative methods to examine patients’ decision-making processes in the context of early stage prostate cancer, focusing on if and how patients and physicians work together in the decision-making process to incorporate patients’ preferences into their treatment choices.

Essay 1 examines patients’ decision making processes within the context of a larger trial that was designed to assess the impact of a novel patient-centered (vs. standard) decision aid (DA) on patients’ decision making processes. The patient-centered DA increased patients’ desire to participate in the decision-making process and interest in active surveillance (Fagerlin et al., unpublished). However, regardless of which DA patients received, their treatment choices were primarily driven by physicians’ recommendation which, in turn, were driven by patients’ medical characteristics (e.g., cancer severity) and not their personal preferences (e.g., interest in sexual activity). Qualitative analyses of clinical appointments revealed relatively passive patients regardless of condition, suggesting that patients may not have known how to participate in clinical appointments and would benefit from pre-appointment communication skills training.

Essay 2 examines the effect of a novel patient communication skills intervention plus a patient-centered DA (vs. a patient-centered DA only) on several measures of patient empowerment using a randomized controlled trial. The intervention was a video (DVD) that modeled specific communication skills patients could use to participate in their upcoming appointments. The intervention increased patients’ intentions to use four process skills (e.g., taking notes) and sense of self-efficacy regarding their ability to ask for referrals and express personal concerns during their upcoming clinical appointments. It did not increase patients’ sense of self-efficacy regarding their ability to seek information or make assertive utterances.

Essay 3 examines focuses on a specific moment in clinical appointments: patients’ requests for treatment recommendations (data from Essay 1). Patient requests for recommendations are a pivotal and powerful moment in clinical appointments, yet no existing studies have examined how patients actually request recommendations nor what patient characteristics are associated with requests for recommendations. Patients or their companions requested recommendations in approximately 20% of appointments. Patients who requested recommendations had higher prostate cancer anxiety, placed increased importance on sex in their lives, preferred shared (vs. patient-led) decision making, and were more likely to prefer active treatment prior to appointments. When requesting recommendations, patients discussed physicians’ expertise and the role of their recommendations, asked physicians to engage in self-disclosure (e.g., “What would you do?”) and repeated their requests.

Truly empowering patients as decision makers in the context of early stage prostate cancer is difficult, and both patients and physicians may be uncertain how to behave in this new paradigm of patient empowerment. Patient communication skills interventions show promise, but continued research is needed to truly transform clinical medicine into a domain in which patients are empowered to fully participate in the medical decision-making process.