Prostate cancer is the most commonly diagnosed cancer in men and the second leading cause of cancer deaths in the United States. In 2016, an estimated 180 890 men will be diagnosed with prostate cancer, and approximately 26 120 men will die of the disease.1 In a lifetime, approximately 14% of all men will be diagnosed with prostate cancer.2
Patients with advanced prostate cancer, such as metastatic castration-resistant prostate cancer (mCRPC), may experience pain during urination, blood in his urine, and urinating frequently at night. Metastatic castration-resistant prostate cancer is defined as cancer of the prostate that progresses despite the deprivation of androgen. Metastatic disease may not exhibit symptoms; however, bone pain, weight loss, or abnormal swelling in the feet may be experienced by the patient. Although there are treatment interventions targeting patients with advanced prostate cancer, survival rates have been relatively unchanged.3–5
There are numerous difficult decisions that patients with advanced prostate cancer must make, including treatment options, cost of care, and family involvement; however, over time, patients with advanced cancer often regret some past decisions.6–8 Many factors may increase the likelihood that patients will not have complete information at the time it is needed in order to optimize decision making, for example, time constraints, forgetting to ask questions, and provider-patient miscommunication.9–12 Treatment decisions in particular are important in relationship to patients’ health outcome.13 Patients with advanced prostate cancer must often choose among hormonal therapy, immunotherapy, chemotherapy, or stopping treatments.14 There are benefits and risks to each of these options. There are also risks related to these options, including hot flashes, pain, fatigue, diarrhea, and infections.14 Treatment decisions may be difficult for a number of reasons. Patients may feel they are burdening caregivers if they take the treatment because of high treatment costs and other associated consequences of treatment.15–17
Many patients with advanced prostate cancer struggle with treatment decisions. Stressors can arise, such as coping with treatment adverse effects and balancing providers’ recommendations with those of family/friends’ desires. Men with advanced prostate cancer can be challenged by the adverse effects from the treatments used to decrease the progression of the disease. These adverse effects include fatigue, hot flashes, bone pain, osteoporosis, erectile dysfunction, and urinary incontinence. In addition, men who live with an incurable disease often struggle with psychosocial issues, such as depression, anxiety, hopelessness, and social isolation.18,19 If patients and healthcare providers fail to engage in a systematic, informed, shared decision-making process (a collaborative process whereby patient and healthcare provider make a healthcare decision together, taking in account scientific/clinical evidence and the patient’s/decision partner’s values and preferences),20 there is a greater chance that the patient will be dissatisfied and regretful regarding the decisions that were made.8,21,22 Moreover, decision partners may become “proxies” in interactions with healthcare providers, but they often misunderstand the patient’s informational and decision needs.23
Decision aids can help patients apply specific health information while actively participating in health-related decision making.24,25 To date, decision aids have primarily been applied to localized disease with an emphasis on treatment knowledge or options. Decision aids are most effective when they are tailored, interactive, collaborative, and focused on the priorities of the individual patient,25–29 but interactive decision aids are rarely implemented.28 In this article, a collaborative, interactive decision aid for patients with advanced prostate cancer that focuses on patient priorities was evaluated to assess its use in facilitating informed, shared decisions about treatments that affect quality of life.
There are a number of decision aids for patients with localized cancers; however, they often provide only disease content and are not truly interactive.25 Very few decision aids focus on the advanced stages of cancer, particularly in prostate cancer. Existing decision aids are largely patient focused and may be inappropriate for use with patients with advanced cancers where patients may lose the ability to make decisions as the disease progresses.
Chosen Decision Aid for Study
DecisionKEYS for Balancing Choices: Cancer Care was developed to improve decision making for patients by enhancing the shared, informed decision-making process and reducing decisional conflict.30 This decision aid is intended to improve decision-making skills when there are multiple complex and stressful choices, help with a specific decision, and provide structured time for support by healthcare providers for decision making. The decision aid consists of 7 components (Table 1): (1) education pamphlets, (2) decision-making theory description, (3) a decision balance sheet that helps prioritize choices, (4) structured time with a healthcare provider, (5) treatment decision collaboration with the decision partner, (6) participation treatment decision preference level, and (7) audio CDs that discuss decisions what other patients with cancer have made and how they made them. The series of decision balance sheets includes pros and cons for oneself and others in a 4-cell table. The decision aid’s audio component and the balance sheet are to organize and empower participants to effectively engage with healthcare providers. The decision aid is coupled with a valid and reliable computer-assisted quality-of-life instrument, Prostate Cancer Symptom Scale, using an electronic handheld device to provide immediate patient-reported outcome results in an instant color graphic summary report over the treatment period. The 18-item self-reported Prostate Cancer Symptom Scale has a Cronbach’s α of .7, which indicates an acceptable reliability. The healthcare provider participates in the interactive decision aid process through reviewing the priorities on the balance sheets with the patient and the decision partner.
Janis and Mann’s31,32 conflict theory of decision making underpins the decision aid. As seen in the Figure, this theory’s basis is that a certain degree of stress from preconditions (risk, hope, time) affects a person’s decision-making style, the quality of the decision, and ultimately the level of satisfaction or regret with the outcome. The theorists describe 4 descriptive styles of decision making, operationalized as nonquality styles: (a) unconflicted adherence (with low stress), (b) unconflicted change (with low stress), (c) defensive avoidance (with high stress), and (d) hypervigilance (with high stress). These 4 nonquality styles lead to the outcomes of more regret, less satisfaction, and a greater likelihood of changing one’s choice. The theory also prescribes a normative style, known as vigilance, which is operationalized as quality decision making, based on clarifying goals and values involved in the decision, canvassing options, searching and evaluating information, contrasting and weighing alternatives, and making contingency plans for implementation. Vigilance is often associated with moderate stress (enough to pay attention to important cues and seek out information, but not too much to be distracted and immobilized by anxiety). This style leads to less regret, more satisfaction, and less likelihood of reversing one’s choice. The decision aid places emphasis on the preconditions of risk, hope, and time by oncology professionals (guidance is given through a brief tutorial of the theory with a diagram); more time for clarifying options, values, and patient preferences (through use of a tailored decisional balance sheet); and more time for support (more structured time by the healthcare providers). This allows patients and their decision partners to recognize they did their best in following a quality decision-making process and will be less likely to feel regret about their decision.
A phenomenological approach was used in this study to examine the experiences of patients with advanced prostate cancer and their decision partners. A hermeneutic phenomenological approach was used to interpret narrative in the context of exploring, describing, and interpreting participants’ experiences that are complex and not understood completely.33 A semistructured interview guide was developed by the authors and was used to capture the narrative of the participants’ experiences and perceptions of the intervention. This article reports the qualitative findings.
Setting and Sampling Plan
Participants were recruited at the University of Virginia Emily Couric Cancer Center in Charlottesville, Virginia, and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University in Baltimore, Maryland. Serial screenings of the clinics’ appointment rosters were conducted by the study nurse and the physician to determine which patients were eligible for the study. Once a patient was identified as eligible, the physician briefly described the study and introduced the study nurse to the patient/decision partner to discuss and answer questions about the study. For those patients who agreed to participate, written informed consent was obtained from each patient and decision partner prior to participation in the study. Participants included 35 pairs of patients and their decision partners (16 pairs reflected patients <6 months since their diagnosis of mCRPC; 19 pairs reflected patients >6 months since their diagnosis of mCRPC). Inclusion criteria for the participants were as follows: (1) diagnosed with mCRPC, (2) disease progression despite testosterone castration levels, (3) Karnofsky Performance Status between 60% and 100%, (4) life expectancy greater than 6 months, (5) 18 years or older, (6) having a decision partner (defined as a patient-selected person who provides support, care, or assistance in decision making), and (7) the ability to understand English. The exclusion criterion was any documented diagnoses of severe psychiatric issues.
Data Collection Procedures
Institutional review board approval was obtained at both medical institutions. The study’s goals, procedures, and decision aid administration were discussed with the study nurses to ensure understanding of the protocol. Patients and decision partners completed the decision aid intervention within the clinic settings to help them make the treatment decision that was right for them. The intervention was then discussed with the participants during the time of the clinic visit that the physician presented the treatment options. Following the decision aid intervention and after the participants made their decision about treatment with the help of the physician and nurse interventionists, an audio-recorded telephone interview with both the patient and their decision partner was conducted lasting approximately 1 hour.
All interviews were transcribed, and potential identifiers were removed from the interviews to maintain data confidentiality. Participants’ thick descriptions of their experiences with the intervention and decision-making process were captured.34,35 Thick descriptions are defined as the way that data are described in a comprehensive manner that builds an analytical explanation of what has occurred. An iterative approach, defined as the authors’ ongoing analysis of the data to narrow the categories, allowed themes to emerge. The first 2 authors read the transcripts several times to be immersed in the data, coded the transcripts, identified strips (short data extracts that capture important aspects of participants’ experiences), and then created categories from which themes were formed. The authors independently reviewed transcripts to validate the themes then confirmed the results among themselves creating credibility, dependability, and confirmability.36,37 Credibility was established by active engagement with the narratives and data as well as through member checking. Dependability and confirmability were established through the use of an audit trail. An exhaustive text description clarifying the lived experience of patients with advanced prostate cancer and their decision partners assisted the authors in understanding the phenomenon. This process allows for transferability of the findings.36 Descriptive analysis was gathered to examine characteristics of the sample. Descriptive data were analyzed using SPSS, version 22 (SPSS Inc, Chicago, Illinois).
Forty-one pairs were categorized as having a man with a diagnosis of mCRPC. Thirty-five pairs (16 pairs with <6 months of mCRPC and 19 pairs with >6 months of mCRPC; total of 70 participants) completed the recorded telephone interviews. Descriptive characteristics are presented for patients and their decision partner (Table 2).
The 3 themes (Table 3) that emerged described the lived experience of patients with advanced prostate cancer, mCRPC, and their decision partners at different points in the cancer trajectories (<6 months of mCRPC and >6 months of mCRPC). These themes were as follows: (1) the decision aid facilitated understanding of treatment options; (2) quality of life was more important than quantity of life; and (3) contact with the healthcare providers greatly influenced decisions.
Decision Aid Facilitated Understanding of Treatment Options
Participants believed the decision aid was helpful in understanding treatment decisions. Patients and decision partners thought the decision aid was helpful in making their treatment decision. The decision aid is a tool that is intended to provide patients and their decision partners with assistance to examine options in a manner that made sense to them. One participant with less than 6 months of mCRPC stated:
It took us a little time to know what was the right thing to do…. You look at your options and what it costs. And, what are you giving up with it? And, what is it going to do for you? So, yeah, your program helps decision making from that standpoint.
Many participants had prostate cancer for years (median, 8 years 9 months) before their disease had progressed into advanced stage and reported they would have benefited from the decision aid earlier. One participant with less than 6 months of mCRPC said:
It would have really been great if my family doctor offered this to me when he said I should go to an urologist for a follow-up on my rising PSA [prostate-specific antigen].
A wife of a man with greater than 6 months of mCRPC stated:
I think they [balance sheets] were helpful. I recall my husband being a little surprised at some things that the balance sheet mentioned… things that he hadn’t really thought about when we began to discuss chemotherapy or its ramifications.
Participants viewed the decision aid as helpful in making treatment decisions. The decision aid highlighted issues that participants were unaware of, thereby helping them consider and discuss issues in depth. By patients and decision partners being able to discuss issues more thoroughly and providing time to do so, it allowed them to have a better understanding and feel more confident in the decisions that they made.
Quality of Life Was More Important Than Quantity of Life
Participants agreed that quality of life was more important than extending life at the cost of suffering treatment complications. Patients felt that treatment adverse effects decreased the ability for participants to enjoy the remaining time they had alive. Participants did not want to have a longer life and have to be in pain or discomfort. A participant with less than 6 months of mCRPC stated:
And you know that’s what was always important to me from the beginning is that anything we could do to improve the quality of life and not just extend it would be good. But, if all we were doing is extending it [life], then I didn’t [want that], and as it turned out, it was as I feared. It [treatment adverse effects] robbed me of what little quality of life I had at the time, and so that’s when the decision was made to stop [treatment].
Often it was not only the patients who believe quality of life is more important, but it was also their decision partner. A son of a man with less than 6 months of mCRPC stated:
Before, it would be really hard to do anything for him (father). But, I think when he used the decision-making process from the decision aid to come to the decision, it was his quality of life that mattered most.
Participants, particularly those with less than 6 months of mCRPC, viewed quantity of life as less important than quality of life. Advanced prostate cancer treatment complications can decrease patients’ urinary continence, physical energy, emotional stability, and mental concentration. These and other adverse effects can inhibit a man from completing daily tasks and enjoying life.
Contact With the Healthcare Providers Greatly Influenced Decisions
Participants found that using the decision aid with the healthcare team was helpful in their decision making. The decision aid facilitated closer patient–healthcare provider relationships, allowing more patient-centered and productive conversations. Those participants with greater than 6 months of mCRPC interacted with the nurses more often than with the physician; however, those patients with less than 6 months of mCRPC interacted with the physician more often than with the nurse. When asked if the balance sheet (prioritizing treatment decision benefits and risks) helped the conversation between the patient/ decision partner and the healthcare provider, a man with greater than 6 months of mCRPC stated:
I think the decision aid would be a good tool for folks to have on the front end. The process of the decision aid when you talk through pros and cons of difficult decisions with the oncology nurse… so they know what your priorities are… there can be a more meaningful discussion between you and the healthcare provider. It was a more efficient clinical visit.
The son of a participant with less than 6 months of mCRPC stated:
I thought he [the patient] was well informed. I had confidence that he thought clearly about the decisions he made, and he regularly questioned the doctors on why a certain treatment was being advised and my comfort level was okay. I thought he was very engaged in the decision making and was very proactive in having physicians explain the treatments they recommended. The decision aid helped with this.
Participants stated that the decision aid benefited interactions with their healthcare provider. Participants felt they had more meaningful conversations with the healthcare provider after discussing their values.
A gentleman with less than 6 months of mCRPC stated:
Many times providers have frequent notions of what’s good for you. The patients generally… don’t disagree with the doctor. So if the doctor says, “Oh, I think we ought to do this and that and something else,” most people will go with it… whether they really think that’s what they should do or not. And, it’s at that point… that’s when the patient should ask questions. I think a lot of patients would not. The program [decision aid] would help give them the information early on… to ask those questions.
Facilitating more interactive contact with the healthcare provider, as well as the oncology nurse, improved patients’ ability and willingness to ask questions and discuss treatment decisions. Providing the interactive decision aid immediately following the presentation of options by the physician was perceived as important in allowing time to process the information. Patients and their decision partners could absorb the information and ask questions through the balance sheet process with the oncology nurse. The oncology nurse provided a brief summary of participants’ remaining concerns to the physician, which helped the physician focus on those concerns. The follow-up conversation between the participants and healthcare provider to come to a treatment agreement was deemed valuable for patients and decision partners faced with complex difficult decisions.
Some qualitative themes emerged differently from the sample based on the length of time the men received a diagnosis of mCRPC. This suggests that patients with less than 6 months of mCRPC may have different needs and decisions to make than those with greater than 6 months of mCRPC because of disease progression, family/friend support, and life experience with the disease. Patients do not often make decisions in isolation, but they discuss difficult decisions with others (ie, family, friends) to help them with their decision.38,39
The decision aid was perceived as positive and helpful to patients and their decision partners in making treatment decisions. The decision aid assisted patients with advanced prostate cancer, mCRPC, to understand the treatment options so that the patients can make informed, shared treatment decisions. The decision aid balance sheets encouraged participants to discuss issues that took priority. Participants believed they were supported by their healthcare provider and oncology nurse and that treatment decisions were influenced by their discussions. The decision aid allowed patients and decision partners more time to feel more comfortable in asking questions and being an active member in the decision-making process along with their healthcare provider. The underpinning conflict theory of decision making contributed by emphasizing pictorially why decreasing stress and increasing understanding of treatment options would likely increase satisfaction of the patient’s treatment decision. This outcome is consistent with a systematic review of knowledge through use of decision aids in oncology studies.40 Also reported in this systematic review,40 there were no identified themes of increased anxiety in using decision aids.
The participants saw value in having close contact with their healthcare provider and oncology nurse. The physician and nurse interacted with each participant during the intervention; however, there was more discussion of the physician’s role by the group with less than 6 months of mCRPC and with the nurse’s role for the group with greater than 6 months of mCRPC. The reason for this may be that the participants with less than 6 months of mCRPC were more focused on their medical diagnosis/treatment and interacted with the physician more. They may be in the process of deciding whether to start cancer treatment. Also, they may have chosen the medical center based on a specific physician’s recommendation. Alternatively, participants with greater than 6 months of mCRPC, who had lived longer with the disease and were considering changing or stopping cancer treatment, were more focused on other issues discussed with the nurse, such as the financial and emotional support of the family after the patient’s death. Similarly, the participants with less than 6 months of mCRPC placed more emphasis on quality of life as more important than quantity of life than those individuals in the group with greater than 6 months of mCRPC. Many in the group with less than 6 months of mCRPC revealed they would rather forego continuing treatment that may extend life and focus more on quality of life. The reason may be related to patients with less than 6 months of mCRPC being more concerned with treatment-related symptoms (ie, hormone induced hot flashes; chemotherapy pain, loss of energy, diarrhea, and loss of hair), whereas those in the group with greater than 6 months of mCRPC knew what to expect.
Participants in this study believed that this decision aid helped them make difficult treatment decisions. Patient–healthcare provider interactions were also enhanced because of the decision aid. The time to process the information with the oncology nurse provided focus on values and priorities, presented as risks and benefits for self and others in the decision balance sheet, and was satisfying for many participants. These findings are similar to other studies in which patients were more satisfied with their decision when they are more engaged in the shared decision-making process.41 Patients and decision partners were willing to use and saw value in the decision aid. In the larger framework of prostate cancer decision aids, which usually provide only disease education, this study’s interactive decision aid, which required patients’ active engagement and participation, was positively viewed by patients and their decision partners.
One limitation to this study was the socioeconomic characteristics of this sample. The majority of the predominantly college-educated sample had an annual income that was greater than $40 000. Patients with a lower socioeconomic status may have different needs and concerns related to treatment decisions. The decision partner sample demographic was predominantly composed of female spouses. The study’s experiences with the decision aid by the decision partners and the interaction with the patient may not be reflective of those decision partners who are male and/or the children of patients with advanced prostate cancer. The family role dynamics and reconciliation of treatment decision among this group might be different from other types of decision partners. Another limitation may be that the decision aid was tested with patients who were predominantly white. Other races may have different needs, values, and experiences when making treatment decisions. A larger study involving a more diverse population is needed to determine the use of the decision aid among different races. All of the participants in this study were willing to utilize a decision aid during their decision-making process, but there might be important differences in decision making for those patients who are not interested in using decision aids. That information may provide clues to other services or instruments that would be valuable for those patients with advanced prostate cancer who may not want assistance from a decision aid. In addition, the interviews were with the patient and their decision partner together, which may have placed some constraints on speaking freely, even though both patients and decision partners were asked when scheduling the interviews if they preferred to be interviewed separately or together. Each participant stated a preference to be interviewed during the same time.
Implications for Research and Practice
Many patients with advanced prostate cancer, mCRPC, and their decision partners struggle with treatment decision making. Poor prognosis is compounded by the fact that decision making is complex, and conflicts arise, particularly surrounding quality-of-life issues.42–44 The findings support the need for increased use of interactive decision aids, which were found to be beneficial to patients with advanced prostate cancer in making difficult treatment decisions. The decision aid helped the participants in ways they perceived as important, such as becoming more aware of their own underlying values, facilitating time and support to convey this information to their providers, and providing additional opportunities to discuss the benefits and risks of different treatment options with healthcare providers and oncology nurses.
It is important to understand that patients may need more assistance than providing only additional treatment information in making difficult treatment decisions. A combination of treatment content, thoughtful interactions between patient and decision partners, and an understanding of the patient’s health priorities and what they consider a quality decision are important as healthcare providers engage with these patients. Healthcare providers should be aware of the patients’ needs and desires to live a life that is considered to be satisfactory to them, considering a disease that is advanced and incurable. More evidence is needed with larger samples to support use of this decision aid, DecisionKEYS, for patients with prostate cancer, as a prelude to common use in practice.30,45
The authors thank the patients who have participated in their program of research for sharing their thoughts, time, and reflections. They also thank the study nurses who were directly involved with the studies, in particular Debra Bliesner, MSN, RN, OCN, and Patricia Featherston, RN.
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