“I’m not a chance taker”: A mixed methods exploration of factors affecting prostate cancer treatment decision-making

Abstract

Objectives

African American prostate cancer survivors experience post-treatment decisional regret more often than European Americans, which can lead to negative long-term effects on quality of life. A prominent driver of health-related decision-making is emotion, yet little work has examined the impact emotions may have on decisional regret. The goal of this study was to explore experiences, perceptions, and emotions of prostate cancer survivors in relation to their diagnostic and treatment decision-making processes, prostate cancer treatment, and outcomes. Additionally, we sought to identify factors that might explain differences in prostate cancer outcomes between African and European Americans.

Design

This mixed-methods study utilized a convergent parallel design, in which quantitative and qualitative data were collected simultaneously and then integrated to more robustly explain relationships between variables. Survivors were eligible for the study if they had been previously diagnosed with localized prostate cancer and were no more than six months post-treatment. The study was guided by the Risk as Feelings Model, which predicts the relationship between emotion and cognition in high risk decision-making.

Results

No men experienced decisional regret following treatment, even if they experienced side effects. While all men reported being surprised about their prostate cancer diagnosis, strong negative emotions were more common among men under 65. Family support and spirituality appeared to mitigate negative emotions. Perceived authenticity of provider communication was the most influential mediator in men’s decision-making and positive perceptions of their outcomes.

Conclusions

To mitigate the impact emotional responses have on decision-making and post-treatment regret, providers should explore alternate therapies (e.g., counselling for men diagnosed with prostate cancer at a young age) and include family members in prostate cancer treatment discussions. Most importantly, providers should be aware of the importance of quality communication on men’s cognitive and emotional processes and their perceptions of treatment outcomes.

Introduction

Prostate cancer (PrCA) is the most commonly diagnosed non-skin cancer in American men (U.S. Cancer Statistics Working Group 2013). However, there is a pronounced disparity in both incidence and mortality rates between African American (AA) and European American (EA) men (Siegel, Miller, and Jemal 2018). At the national level, AA men have a PrCA incidence rate over 50% higher than EAs (Siegel, Miller, and Jemal 2018); in southeastern states such as South Carolina, this differential is much higher (Hebert et al. 2009). These racial disparities are explained, in part, by the increased aggressiveness of PrCA in AA men coupled with the increased likelihood of a delayed diagnosis (Powell et al. 2013, Khani and Robinson 2018). While PrCA mortality can be diminished if timely treatment occurs (National Cancer Institute 2013), there are a myriad of individual (e.g., knowledge, physician mistrust, perceived racism) (Peek et al. 2013, Moore et al. 2013), social (e.g., family, religious) (Bowie et al. 2017, Song et al. 2017), provider-related (e.g., physician views of patient role) (Légaré and Witteman 2013), and institutional (e.g., time constraints) (Légaré and Witteman 2013) factors that can influence whether timely PrCA treatment decisions occur.

The American Urological Association has issued standards for healthcare providers in assisting patients with making shared treatment decisions based on life expectancy, disease stage, health status, and personal preferences (Sanda et al. 2018). However, making a treatment decision can be complex and stressful (De Sousa, Sonavane, and Mehta 2012). Several PrCA treatment options are available based on the disease stage (stages 1 & 2 are localized, stage 3 is beyond the prostate in surrounding lymph nodes, and stage 4 has metastasized to other organs), but no treatment is empirically superior (Hamdy et al. 2016). Furthermore, PrCA treatment risks vary, and long-term side effects can exist for any treatment (Punnen et al. 2015, Donovan et al. 2016). Decisional regret after perceived sub-optimal treatment results can lead to negative long-term effects on men’s quality of life (Hoffman et al. 2017) and contribute to emotional distress (Sharpley, Bitsika, and Christie 2012), which has been linked to negative health outcomes (Suls 2018). A relevant concern is AAs experience post-treatment decisional regret more often than EAs (Collingwood et al. 2014, Morris et al. 2015).

To develop optimal interventions for helping men make life-altering decisions about PrCA, it is critical to understand key mechanisms that affect men’s decision-making. There is growing evidence that discrete emotions (e.g., anger, disgust, fear, happiness, sadness, surprise) are prominent factors in general and health-related decision-making though emotions have been understudied in cancer treatment decision-making (Rebecca A. Ferrer, Paige McDonald, and Barrett 2015). Additionally, no studies have examined how emotions affect PrCA decision-making. For example, does fear cause less risky, but possibly less effective, PrCA treatment decisions (Knops et al. 2013)? In addition, there has been no research on the factors that most often affect a man’s emotions during the PrCA treatment decision process, and whether these factors differ by race. A deeper understanding about how emotions affect PrCA treatment decision-making can support the development of decision-readiness interventions that can increase the likelihood that men make treatment decisions that are consistent with their values and decrease the likelihood of decisional regret.

Conceptual Framework

This research was guided by Loewenstein et al.’s (2001) Risk as Feelings Model, which suggests high-risk decisions are made through a dual approach involving a reciprocal exertion of cognitive evaluation and emotions (Loewenstein et al. 2001). Though similar to existing emotion-related decision frameworks that recognize the dual role of cognition and emotion (Damasio, Everitt, and Bishop 1996), the Risk as Feelings model can be distinguished by the concept that emotions (e.g., fear) do not simply serve a peripheral role in decision-making, but outweigh cognitive evaluation in high-risk situations (Loewenstein et al. 2001). This overexertion of emotion on cognition can prompt a decision that does not always align with the best treatment approach (Loewenstein et al. 2001).

Cognitive evaluation and emotions are influenced by factors such as individual’s anticipated outcomes and subjective probabilities. Anticipated outcomes refer to how a person thinks they will feel following a specific decision. For example, during a treatment decision, a patient might consider possible long-term side effects and how they will make him feel. Subjective probabilities are self-calculated standards of success or failure based on an individual’s values (e.g., what is the likelihood that this decision will lead to side effects). The model also suggests there are additional factors that affect an individual’s emotions during a decision, such as vividness (e.g., patient imagines scarring associated with surgery); the proximity of an impending decision (e.g., a patient who must be make a quick treatment decision may experience a higher level of fear than a man who has a month to decide); and an individual’s mood (e.g., an individual who is in a good mood may make more optimistic decisions).

Based on prior studies, we also posit other factors will have a salient impact on PrCA treatment decisions, including level of mistrust (Moore et al. 2013) and perceived racism (Song et al. 2014). For example, perceived (or internalized) racism can hinder shared health decision-making between AAs and EA physicians by limiting AAs participation in the decision-making process (Song et al. 2014).

The Risk as Feelings model has been used to guide health and cancer decision-making studies (Hemmerich et al. 2012, Kobbeltvedt and Wolff 2009). However, no studies have used this conceptual framework for studying emotion in PrCA treatment decision-making. The goal of this study was to explore the experiences, perceptions, and emotions of AA and EA PrCA survivors with diagnostic and treatment decision-making processes, PrCA treatment, and long-term outcomes (e.g., quality of life, decisional regret). Additionally, we sought to identify factors that hindered or facilitated the process and might explain salient differences in treatment decision outcomes between the two groups.

Methods

Setting and Participant Recruitment

This mixed-methods research was conducted at a prominent cancer center and research institute in a southeastern state, and with whom the authors have a long relationship. The team worked with two nurse navigators to identify eligible PrCA survivors through an electronic medical record system. Survivors were eligible for the study if they: (1) had been previously diagnosed with localized PrCA (i.e., stage 1 and 2); and (2) were no more than six months post-treatment. Two nurse navigators (authors 3 and 4) contacted eligible participants, informed each about the study, pre-consented, and scheduled a time to meet with the research team for further discussion.

Data Collection

This study utilized a a mixed-methods i.e., convergent parallel design, in which quantitative and qualitative data were collected simultaneously, then integrated to more robustly explain the relationships between variables (Castro et al. 2010). In this design, the research process weighs both qualitative and qualitative research equally, these data are analyzed separately, and combines data during the data interpretation phase (Creswell and Clark, 2017). Therefore, in our study, the qualitative interview data was collected following consent, but the quantitative data was collected immediately following the interview. These triangulated data enabled the researchers to validate findings based on the convergence or divergence the results (Creswell and Clark, 2017). Based on prior research (Friedman, Johnson, et al. 2012, Friedman, Thomas, et al. 2012), we posited that saturation and sufficiency should be reached by recruiting 10 to 15 participants with similar characteristics. After obtaining informed consent from each participant, the study PI (Owens), an AA male, conducted qualitative interviews followed by a quantitative survey. Data collection took place in a private room at the cancer center with each encounter ranging from 30 to 90 minutes.

Quantitative Data

Demographics.

Eight items were included to assess participant’s age, race, income, education, employment status, marital status, and type of insurance coverage.

Treatment received.

A multiple-answer question was included to determine if men received radiation, prostatectomy chemotherapy, hormone therapy, or other therapy.

Decisional regret.

To assess participants’ decisional regret, we used O’Connor’s 5-item Decision Regret Scale (O’Connor 1996). Likert scale response options (ranging from 1=Strongly Agree to 5=Strongly Disagree) were solicited to five statements related to whether they were comfortable with their decisions post-treatment (e.g., It was the right decision). The internal consistency reliability scores range from α=0.81. to α=0.92 based on prior multi-application psychometric testing (Brehaut et al. 2003).

Racism in healthcare.

Perceptions that racism against AAs exists in the healthcare were measured by the 4-item Racism in Health Care Index (LaVeist, Nickerson, and Bowie 2000). The scale consists of items like: ‘Doctors treat AA and EA people the same.’ Response options were measured on a Likert scale ranging from 1=Strongly Agree to 5=Strongly Disagree. The internal consistency reliability of the scale using was reported in a prior study at α=.76 (LaVeist, Nickerson, and Bowie 2000).

Personal Discrimination in Healthcare.

A single-item was used to measure personal discrimination in healthcare settings (Hausmann et al. 2010): ‘While getting medical care, have you ever experienced discrimination, been prevented from doing something, or been hassled or made to feel inferior because of your race ethnicity, or color.’ The response options were ‘occurred at least once’ or ‘never’.

Medical Mistrust.

To assess systems-level medical mistrust, we used a 5-item Medical Mistrust Index (α=0.74), with response options ranging from 1=Strongly Agree to 5=Strongly Disagree (LaVeist, Nickerson, and Bowie 2000). A sample question from this index is ‘Patients have sometimes been deceived or misled at hospitals’.

Qualitative Data

Participants were engaged in an open-ended, semi-structured interview to learn about their PrCA treatment decision-making experience and perceived emotions at the time of this decision. Domains of the Risk as Feelings Model were used to craft questions to determine the survivor’s (1) anticipated treatment outcomes, (2) process for evaluating their options including the subjective probabilities, (3) their recalled emotions at the time of time of the decision, and (4) other factors that may have affected their decision (e.g., mistrust). Each interview was digitally recorded and professionally transcribed.

Data Analysis

Quantitative Analysis

Prior to analyses, two negative items on Decision Regret Scale and one negative item Racism in Health Care Index were reverse coded. Frequencies were calculated for all demographic items and the single-item used to measure personal discrimination in healthcare. Means were calculated for each scale/index by summing the mean responses, 1 to 5 (i.e., Strongly Agree to Strongly Disagree), across all scale/index items and dividing by total number of items. All quantitative analyses were conducted using SPSS vs 24.

Qualitative Analysis and Data Integration

Guided by the theoretical framework, the first two authors used a thematic analysis approach to the qualitative data (Braun and Clarke 2006). They first developed a draft codebook through an open-coding process of two conceptually rich interviews identified by the first author, which they then used to individually code six of thirty transcripts (20%). A subsequent meeting was held to reconcile the few minor differences in coding. The refined codebook was then used to guide open and axial coding of all transcripts. Throughout the analytic process, emergent themes were compared and contrasted within and between interviews. After naming the final themes, the authors met to integrate the quantitative and qualitative results consistent with a convergent parallel design; this iterative process included mapping the findings back to constructs from the theoretical framework to organize the presentation of the results. The process also explored the ways that findings that emerged from these separate channels of data converge and diverge in order to produce a more comprehensive understanding about men’s PrCA treatment decision-making.

Results

Demographics

The sample (n=30, see Table 1) included 17 AA and 13 EA participants with a mean age of 68.5 years. Most participants either had completed high school (27%, n=8) or some college (40.0%, n=12), while a slightly smaller percentage completed college or advanced degrees (20%, n=6) or did not complete high school (13%, n=4). Most participants were married (80%, n=24), retired (80%, n=24), and had some form of health insurance (96.6%, n=29). Household incomes were variable, but over a quarter (30%, n=9) reported earning between $20,000 and $39,000 per year and most (70%, n=21) reported that they and one other person were supported on their incomes.

Table 1.

Descriptive Statistics

Variable	Frequency	Mean (SD) or %
Age	39	68.5 (7.4)
Education
High School	10	26.0 %
Some College or Vocational School	13	33.0 %
Completed College or Vocational School	7	18.0 %
Post Graduate School	9	23.0 %
Marital Status
Single/Never Married	7	18.0 %
Married	24	61.0 %
Separated	4	10.0 %
Divorced	3	8.0 %
Other	1	3.0 %
Income
<$19,999	7	18.0 %
$20,000-$39,999	10	26.0 %
$40,000-$59,999	2	5.0 %
$60,000-$79,999	7	18.0 %
$80,000-$99,999	4	10.0 %
≥$100,000	6	15.0 %
Not Reported	3	8.0 %
Employment
Full time	21	54.0 %
Part time	3	8.0 %
Retired	4	10.0 %
Unemployed	6	15.0 %
Not Reported	5	13.0 %
Health Insurance (Type)*
Employer	19	49.0 %
Private	20	51.0 %
Medicare	6	15.0 %
Medicaid	2	5.0 %
Military Healthcare	11	28.0 %
Prescription Drug Coverage	5	13.0 %
Other	1	3.0 %
No Coverage	3	8.0 %

Anticipated Outcomes and Subjective Probabilities

Theme 1: Timing of speciality referral

All but one of the men recruited for this study had early stage PrCA (stages 1 and 2) and one participant was in stage 3. The majority (n=20) were alerted to a potential problem through a routine PSA exam. Few men experienced prior symptoms, but those who had symptoms typically experienced frequent or hindered urination (n=3). Abnormal PSA exams (4.0 and higher) prompted primary care providers to refer men to a urologist. Prior to recommending a biopsy, participants reported that all urologist performed at least two repeat PSAs to measure the change in PSA over time as opposed to recommending an immediate biopsy:

As long as it stayed under 4, it was not a big concern, even though it needed to be watched very carefully. So, it [PSA] went from 4 to 7.9 in about a year and a half. So, once it did that, they [urologist] did the biopsy.

(James, EA, age 75)

The PSA, which had always been borderline high, at that time of my physical went from 4 to 8. In other words, it doubled ….in one year.

(Gabriel, EA, age 77)

Theme 2: Anticipating Potential Outcomes

Perhaps because of the early diagnosis, many participants anticipated returning to a similar quality of life prior to discovering their PrCA. In response to his expected outcomes following treatment, Reuben (AA, age 55) stated, “I anticipated the new grandbabies over there. That’s what I anticipated on - seeing him get married.” But despite their overwhelmingly positive expectations of life after PrCA treatment, participants were aware of the treatment-related side effects. In fact, some participants stressed the benefits of surviving PrCA far exceeded the anticipated treatment side effects, even when these side effects were detrimental to their sexual performance. As Steven, a 73-year-old EA related:

Well, I figured…that if I hadn’t did it [received PrCA treatment] it’s a possibility my life would have been cut short. I knew that my sexual part of it would probably be [affected] because I’m old anyways.

Phillip, a 52-year-old AA added:

I’d much rather live. My dick don’t define me. So I’m going with the living part. Being healthy, seeing my nieces and nephews. You know spending time with them and my mom [are more important].

Therefore, while they were concerned about their quality of life following PrCA treatment, both EA and AA men’s priority was living as long as possible, which they could accomplish with a high level of certainty as early stage patients.

Feelings

Theme 3: Patient Emotions After Diagnosis

For about one-fifth of the men interviewed, the diagnosis of cancer was devastating. When confronted with his PrCA diagnoses Joshua, a 77-year-old EA participant, stated, “I never wanted to hear that C-word mentioned…so emotionally I was not good for a number of months, probably until I started my procedure.” The most emotionally affected men (of this smaller group) were AAs who were in their 50s and early to mid-60s (n=8). One of the youngest participants, Philip, was especially overcome at diagnosis because he had not experienced any PrCA symptoms:

There was absolutely nothing wrong with me…when he told me that I was like wow. I cried for about five minutes. Came back in, got myself together, and said, all right, let’s do this [decide on treatment].

Similarly, Mark, a 53-year-old AA man added, “Actually, it kind of choked me up. It kind of broke me down, it really did.” When asked further questions about his thoughts and emotions at diagnosis, Seth, a 66-year-old AA said, “It really devastated me, because I didn’t know what I was about to go through.”

Even though these men were surprised and concerned following diagnosis, most were comforted with learning their cancers were treatable. For example, when asked about his response to his diagnosis, Jesse, a 62 old AA participant responded:

Kinda sad and surprised would be my combination. It lasted for a pretty good bit, until they told me that there’s a good chance I could get through it.

Another less prominent but protective factor affecting post-diagnosis emotional response among participants was age. Three older participants stated that they would have reacted much differently had they been diagnosed at an earlier age, primarily because they had lived full lives. James, a EA participant stated:

If you’re 30 years old, and you realize you have cancer, then that’s one thing. If you’re 75, like I am right now, it’s a little bit different because you’ve gone through some things, and you know that the amount of time you’ve got left is not a whole lot.

Similarly, Joshua, also a EA participant, added:

If I had this diagnosis in my 50s, I would be more concerned about it today than I am when I’m 77. Now I don’t have to be cancer free for 30 years. I’m not going to live that long. So something else is gonna get me sooner or later.

Other participants were simply content with their outcome because of their age and faith. Paul, a EA participant, related, “the Lord’s been good to me….I’ve had 72 wonderful years, and I hope I have more, but I’m thankful for what I have, and I’ll deal with it [PrCA].

While emotions were variable among men leading up to a treatment decision, the majority of participants did not harbour negative feelings about their PrCA diagnosis following their treatment decision. Instead, they were hopeful about being healed. As Jesse, a 62-year-old AA participant described, “Well, I felt better that things were in the works and there was somewhat of an end to all this.” Any remaining concerns among participants typically related to uncertainty about the logistics or immediate outcomes of the treatment beyond the common side effects. For example, one participant was unsure about the process for administering radiation and wondered if it would affect his skin.

Theme 4: Spirituality as a Protective Factor for Patients

Half of participants (n=15) exhibited coping strategies/protective factors that affected how they reacted to their cancer diagnosis. The most common protective factor was spirituality; in particular, the fear and worry associated with a PrCA diagnosis and cancer outcomes was mitigated because of their unwavering faith in God. These beliefs were not race dependent as exemplified below:

I’ve got real strong faith. I believe that I got a shot right from the beginning… because there was a time when I went through some stuff. I believe God brought me through it.

(Abraham, AA, age 66)

One of the reasons that I felt calm is that I’m a Christian. So I knew that whatever the circumstances…I would not be alone. He [God] would be there with me. So I think my faith helped me to accept the news.

(Gabriel, EA, age 77)

Theme 5: Patient’s Perceptions of Family Emotions After Diagnosis

Participants described their family members’ emotions about their diagnosis as surprised, worried, concerned, and fearful. Family members were often more affected by the news of PrCA than the men themselves, especially female family members. For example, in reference to his PrCA diagnosis, Adam, a 79-year-old AA participant stated, “It didn’t bother me. Believe it or not…my family, I think it affected them more than it did me.” In many cases, the spouses of the participants were with them as they received their diagnosis. When asked how his spouse responded to his PrCA diagnosis, Gabriel, a 77-year-old EA participant responded “Well, she cried a little bit….Later on, I discovered that, at home, when she was feeling the need to cry, she would go where I wouldn’t hear her.” Spouses and other family member’s tendency to protect the family member (e.g., shielding their emotions), was also reflective in their tendency to maximize their emotional, informational, and instrumental support for the patient.

Theme 6: Family Support Matters

Family members were critical to participant’s adjustment to their newly diagnosed PrCA and for providing the support men needed to make a final treatment decision. Immediately following diagnosis, family members most often provided participants with emotional support, though many of them had a more difficult time than participants accepting the news. Patients recalled being reassured by family members that “It’s gonna be all right” or that “We’re going to beat this.” After families and patients adjusted to the diagnosis, families directed their efforts to the informational and instrumental needs of the patient. As sources for informational support, families conducted research on PrCA, using online and hardcopy sources. Other family members served as referees, asking the participant questions about what he had learned in his own research and how it was informing the overall decision. As sources for instrumental support, spouses and other family members would attend each oncology appointment following diagnosis. Family’s attendance at these appointments were also an opportunity to ask additional questions to augment the research they had conducted. Most men actively invited their spouse or other family member to attend their appointments similar to the following patients:

I took her because that’s my wife and she has the need to know… A lot of men go without their wives. My suggestion is they go with their wife because we’re not going to take it all in.

(Reuben, AA, age 55)

James, a 75 year old EA participant stated “Well, she [spouse] came to every doctor’s meeting. She was with me, of course, when I had the seeds [form of radiation therapy] implanted. She was right there involved in listening.” Therefore, family support was vital to the patient’s emotional wellbeing and enabling them to obtain the information necessary to weigh the risks and benefits of available treatments.

Cognitive

Theme 7: Calculating the Risks vs Benefits of PrCA treatment

All participants with exception to the Stage III patient were presented with multiple options for PrCA treatment which they had to evaluate based on their personal values and expected outcomes. Overall, men prioritized treatment based on one or more of the five factors including: (1) best probability of getting rid of cancer; (2) least time to recovery; (3) best chance at regaining normalcy; (4) least side effects; and (5) option to retreat if cancer reoccurs. For example, related to the probability of eliminating his PrCA, Philip, a 52-year-old AA participant stated, “I didn’t want to play with this thing. I know the radiation – it was like a 50/50 chance with that - killing it or not killing it. There was an 87 percent chance the radical [surgery] would get it. I’m going to do the 87 every time.” Commenting on the importance of recovery in his treatment decision, Daniel, a 68-year-old AA stated, “My decision was made basically on…what was going to keep me down the least amount of time.”

Beyond their own personal values, providers also provided anticipatory guidance based on the stage of the participant’s cancer, age, prior comorbidities, and other salient factors. Furthermore, many of the participants knew others (including family members) who had received treatment for PrCA or other cancers. Their perceptions of these individual’s outcomes were also considered in participants decisions about their own treatment. Gabriel related the impact the side effects experienced by a friend with PrCA had on his decision-making:

His outcome with surgery is that he has to wear adult diapers. I thought that was kind of restrictive…my wife and I do a lot of traveling. I thought, that’s a risk I don’t want to take.

Behavior

Theme 8: Patient-Driven Treatment Urgency

Most (n=28) participants were informed that their PrCA could be actively surveilled because of its early discovery. There were very few situations where healthcare providers suggested men immediately undergo treatment; this occurred only when cancer was more aggressive or if the patient was young. Reuben, an AA participant relayed:

[My doctor said] If you were in your 70s and the situation you’re in we’d let it go. But being that I’m 55 when I was diagnosed he said I have a better chance of dying from prostate cancer if not treated.

Otherwise, healthcare providers often advised participants to respond to their PrCA using an active surveillance approach. Abraham, a 66-year-old AA participant recalled his provider saying, “I can assure you that this incident is not going to take your life. Take your time.” However, participants who were candidates for observing their PrCAs, did not. When asked why active surveillance was not an option, participants, such as those quoted below, were most commonly concerned about the probability that the cancer might spread, creating angst:

If I got it, and can get rid of it, I wanna get rid of it. Don’t tell me about observing. What are you gonna do when it gets worse?

(Andrew, AA, age 71)

I’m not a chance taker. I don’t like to gamble. So I could have gone active surveillance, but how long do you go active surveillance, something could’ve happened.

(Jacob, EA, age 68)

Hence, despite the stage of the cancer, both EA and AA men did not consider active surveillance as a proactive means for cancer control.

Theme 9: Treatment Choice and Owning the Decision

All men, except for one, opted for treatment of some kind within a year post-diagnosis, even if active surveillance was an option. A majority (78%, n=23) of these men received radiation treatment, with 95% receiving this treatment via Cyberknife, a new, fully robotic radiation delivery system. The robotic design, coupled with real-time imaging, enables the CyberKnife System to deliver a maximum dose of radiation directly to the tumor from many different angles with sub-millimeter precision (King et al. 2003). The remaining participants (22%, n=7) received a robotic radical prostatectomy. One of the men receiving surgery followed up with CyberKnife radiation. In addition, three men who received CyberKnife or traditional external beam radiation received follow-up hormone injections.

While AA and EA patients received decisional support from their healthcare provider following diagnosis through consultations, they consistently took ownership of the decision-making process. All participants emphasized their informed or shared role in making a final PrCA decision, but the extent to which these decisions were shared were variable. Some men perceived they made the treatment decision with minimal input, such as Adam, a 79-year-old AA participant who reported making “ninety percent” of the final treatment decision. Other men recognized they received significant advice from their provider, but ultimately it was their decision

I think it boiled down to me making the final decision, but I was utilizing all the input that I could get to make the final decision.”

(James, EA, age 75).

Joseph, a 71-year-old, EA participant referred to this type of decision-making as “partially shared.” A third, but smaller, subset of men reported equal or shared engagement in the decision-making process. As Timothy, a 62-year-old AA participant stated “We shared in the decision. They explained exactly what options I had. Then there were conversations back and forth similar to what we’re doing now.” In addition, when asked about family involvement in the decision, participants described family as being supportive of whatever decision the participant made, but not being involved directly in the decision.

Other Salient Constructs: Beyond the Risk As Feelings Model

Theme 10: Engendering trust through caring communication

Communication was an extrinsic factor not predicted by the Risk as Feelings Model, and appeared to affect not only the PrCA treatment decision-making process, but also participants’ emotional responses and attitudes towards post-treatment outcomes. Beyond just giving factual information, interactional mannerisms (e.g., attention to body language, matter-of-fact communication style, personal opinions) facilitated a more intimate relationship, even within the context of first consultation. As Ben (AA, age 65) related:

With him sitting down, talking with me and my family, [made me feel] that I was important to him…He wasn’t just in medicine for….the finance part, but he had a love for his patients.

Andrew (AA, age 71) added:

He tell you the good with the bad. He don’t try to beat around the bush. He didn’t try to force nothing on me, and he told me the pros and cons…And finally I said, “Well, what would you do, doctor?” He said, “Well, you’re in good shape.”…So, he said, “You’re in good shape for your age. If I were you, I’d probably do something about it.

When the participant perceived the interaction with their healthcare provider as honest and genuine, the emotional responses experienced immediately post-diagnosis and during the treatment decision-making process appeared to be eased. Moreover, when a participant referenced what they perceived to be good communication on the part of their provider, they were happy with the treatment outcome, even if the result was less than optimal:

He [healthcare provider] explained what would happen during the procedure… how it would affect me…. And what he told me turned out to be true, ‘cause I experienced it. He did a good job.

(Adam, AA, age 79, side effects: loose stool, painful urination)

Conversely, when a participant felt provider communication was sub-par, trust in that provider was eroded, even if the participant was cognitively aware of the provider’s abilities:

We just didn’t feel real comfortable… I think the way he answered some of our questions… When I’m the one having it [treatment] done, you need somebody that absolutely is giving you their undivided attention.

(Peter, EA, age 74)

Outcomes

Theme 11: Discrimination was not my experience

Participants were overwhelmingly neutral in regard to items about medical mistrust (M=3.1). They consistently reported a high level of trust in the medical system as a whole and especially their current healthcare providers. Additionally, almost all men felt that racism was not a factor affecting the quality of medical care. Specifically, participants agreed (M=2.2) that AAs and EAs are treated equally by the medical system (i.e., no racism). When asked whether or not they had personally been discriminated against while receiving medical care, (96.5%, n=28) of respondents reported that they had not experienced discrimination, even if bias might exist. In response to a question about whether factors such as race, class, gender, and education lead to bias in healthcare, Thomas, a 61-year-old AA responded:

My own personal experience specifically with this [PrCA treatment], I didn’t see or feel any sense of bias or prejudice in wanting to give me the best care. I do recognize that’s a possibility in society as a whole. That could be based on one’s class, education level, the way you’re able to interact with your doctor or not interact with your doctor. So, I’m not ignorant to that as a possibility.

Social class and whether or not an individual had good health insurance were the most commonly recognized barriers participants identified as potentially affecting the quality of care an individual receives. While all but one of the participants in this study had some form of insurance, and none mentioned ever being personally affected by this bias, participants felt those without insurance would receive minimal care and be “patched up” and “sent home” as opposed to receiving optimal care. Daniel, a 68-year-old, AA expressed:

If you’ve got money, you can get any treatment you want…if you don’t have insurance, they’re going to treat you, but they’re going to get rid of you…quickly.

Theme 12: No Regrets

Participants, on average, felt strongly they made the right decision about their PrCA treatment (M=1.4), though most experienced some side effects which included one or more of the following: soreness, pain while urinating, urinary leakage, incontinence, loose bowel movements, bleeding, loss of strength, fatigue, and erectile dysfunction. Side effects were more severe in patients who underwent surgery or traditional radiation as opposed to Cyberknife radiation. For example, Philip, a 52-year-old AA surgery patient stated:

Wearing the diapers – you know that was tough man. It weighs in on your manhood. But you know there’s a purpose for it and you’re not going to stay there…That was just one of the levels that you had to go to get to where I am now.

Patients receiving the Cyberknife radiation treatment also had faster healing times as compared to participants in other treatment conditions. However all side effects, with the exception of fatigue and ED, had mostly subsided in all men by the time they were interviewed. Despite suffering side effects or temporary dissatisfactions linked to their treatments, none of the participants reported experiencing decisional regret. According to Philip:

Up until today I’m still good with it – no regrets. I would do it all over again if I had to. I can’t see myself being any better than I am making a different choice…. sleeping with the catheter, one leg this way, one leg that way, having the issues that I had…was all a part of getting to where I’m at now.

Similarly, Thomas, a 61-year-old AA radiation patient stated:

I would have still done it [radiation treatment] but I do realize that virtually any decision there would be some negative consequences. Right now would be the financial aspect of it. Later it probably would have been …. more life threatening if I would have waited.

Most often the lack of decisional regret was attributed by participants to the information provided to them by their provider. It was reiterated that providers were not only communicative about the benefits of the treatment on which the patient had decided, but healthcare providers also provided anticipatory guidance which included many of the side effects that patients experienced. In regard to his treatment outcomes, including side effects, Ben, a 65-year-old AA participant added, “Well, no. I’m not dissatisfied with it (side effects: urine flow limited)… It’s because I was instructed that this was gonna be – before making my decision.”

Discussion

Participants in our study had early stage PrCA and through conversations with their provider were able to understand their probabilities of survival and quality of life (i.e. subjective probabilities). Most participants anticipated that their life after treatment would likely be similar in quality to the life they had prior to their diagnosis (i.e., anticipated outcomes), with exception to some potential side effects common among men who receive PrCA treatment. Strong negative emotions among participants were more common among younger men though all participants reported to be either surprised or concerned when were diagnosed. However, in most cases, these emotions were less prominent following the treatment decision and absent post-treatment. Family members were more likely than participants to be emotionally affected by the PrCA diagnosis but were also less emotional after they had a thorough education about PrCA treatability and post-treatment quality of life.

Multiple factors suggested by the conceptual framework may affect men’s emotions during the decision process. In the original conceptual framework by Loewenstien et al. 2001, vividness and mood were two constructs that can affect a man’s emotions during a high-risk decision but did not emerge in this analysis. Although most men expressed cognitive knowledge of the slow-growing nature of PrCA and their option to employ active surveillance (i.e. proximity), all men viewed their impending treatment decisions as urgent. This individual urgency (i.e., emotions) may explain why most participants took ownership of the treatment decision, quickly and decisively eliminating options (i.e., active surveillance) that were appropriate but not perceived to align with their expected long-term outcomes.

Additionally, based on prior literature we expected that AA men would have higher levels of medical mistrust than their EA counterparts (Boulware et al. 2003, Carpenter et al. 2009) and would have experienced racism at some juncture in their medical history (Abramson, Hashemi, and Sánchez-Jankowski 2015), both of which may impact emotional response. Counter to some earlier findings, all participants had extremely high levels of trust in the medical system and no one had prior experiences with racism in their medical encounters. Interestingly, this even occurred within the context of a first-time consult with a specialist. This high level of trust may be partly related to the clarity of the communication between these providers and their patients, or to participant trust in the primary care provider’s opinion of the specialist. The most commonly perceived bias affecting general medical care including PrCA treatment was related to an individual’s insurance status, which could limit treatment, but this was never experienced by any study participants. Boulware et al. (2016) also found low overall trust in health insurance companies among individuals 18 to 75, but noted AAs were more likely than EAs to trust health insurance companies while less likely to trust healthcare providers.

The only other factors that seemed to have a significant impact on the emotion of participants following a PrCA diagnosis was spirituality, age, and family support. Participant’s deeply engrained faith not only shielded men from negative emotions, but also gave them hope that they would regain optimal health following PrCA treatment. These findings are consistent with earlier literature that demonstrates the correlation between spirituality and mental/physical wellbeing (Salsman et al. 2015, Jim et al. 2015) and emotional coping with cancer (Garssen, Uwland-Sikkema, and Visser 2015, Salsman et al. 2015). Older participants were less prone to strong emotional responses than younger men, as seen in previous research indicating the greater impact of cancer on the psychological well-being of younger versus older cancer survivors (Costanzo, Ryff, and Singer 2009). Explanations for why these age-related differences exist are two-fold: (1) Older men are more likely than younger men to have dealt with other health problems in the past and there is an expectation and that additional health concerns might arise; and (2) Older men have a shorter life-span and PrCA (a slow growing cancer) may be less likely to lead to mortality than if they were much younger. Finally, having a strong sense of connectedness to family was characteristic of all participants and was identified by the participants as contributing to a strong desire to survive.

Similar to previous findings on support in the context of breast cancer (Felder et al. 2017), participants’ cognitive evaluation of their treatment options were informed by anticipatory guidance from both interpersonal (family members’ informational support, PrCA survivors experience, healthcare providers expertise) and non-interpersonal sources (literature, internet). However, the most significant anticipatory guidance was relayed by the participant’s healthcare provider. Providers were accommodating of family member questions as many participant’s family members attended healthcare appointments (i.e., provided instrumental support). This anticipatory guidance was not only highly influential to the participant’s PrCA treatment decisions, but also affected their perceptions of their treatment outcomes (e.g., regret vs no regret). Counter to some earlier literature that links decisional regret to severity of side effects (Christie, Sharpley, and Bitsika 2015), our study demonstrated that even when side effects occurred, regret was negated when patients were well aware of the potential side effects and considered this possibility in their evaluation of PrCA treatments. Therefore, patient satisfaction (or regret) is not only dependent on the treatment outcome, but the healthcare provider’s ability to thoroughly address the quality of life (including side effects) a patient might experience following each treatment option. The quality of anticipatory guidance is also believed to influence continued trust between the patient and healthcare provider.

Despite the significant input that healthcare providers contributed, participants claimed majority ownership of making the final PrCA treatment decision. Even in instances where it was evident that the provider guided them to a decision based on their specific diagnosis, men considered their consenting to a treatment as having made a decision. Among those participants who recognized that a shared decision-making had taken place, most described a process where they were the key decision-makers but received information from the provider necessary for them to make the decision. Few participants recognized an equal role between themselves and the provider (i.e., shared decision) in the treatment decision-making process, although shared decision-making did take place in some instances.

Limitations

Our study was focused on a small population of PrCA survivors from a small city in the Southeastern U.S. Over half of these patients had received treatment through a relatively new radiation therapy called Cyberknife. While the technology is new, Cyberknife had a shorter recovery time and less long-term side effects for our participants when compared to other PrCA treatments. Therefore, our findings may not extend to men who have had traditional PrCA treatments with differing outcomes. In addition, most of our participants’ cancers were discovered early, limiting the saliency to those with advance PrCA. Despite these limitations, our research contributes meaningfully to the cancer disparities, emotion, and decision-making literatures. Future research should focus on replicating this study among younger men diagnosed with PrCA and men who have received more traditional PrCA treatments.

Implications and Conclusions

Applying our theoretical framework to findings from our study, men with early-stage PrCA, regardless of race, have exceedingly positive anticipated treatment outcomes because of the high probability that their PrCAs can be treated. Emotions are most affected by factors including age at diagnosis, family support, and spirituality as opposed to mistrust, perceived racism, vividness, mood, or proximity. Anticipatory guidance focused on the former may help men decide on the most appropriate treatment options; healthcare providers should (1) explore alternate therapies (e.g., counselling) for men who are diagnosed with PrCA at a young age, as these men are the most affected emotionally by a PrCA diagnosis; and (2) if desired by the patient, include family-members (particularly spouses) in discussions about PrCA treatment, as this information may not only decrease family member’s existing concerns (or reduce negative emotions) but enable them to determine how to best support the patient’s needs.

To address the importance of the provider in decision-making, future iterations of the Risk as Feelings Model should include and evaluate the role of healthcare provider communication on other constructs in the conceptual framework (e.g., emotion, evaluation, and outcome). Healthcare providers must be aware of how important the quality of their interactions are on cognitive and emotional processes of patients. Quality communication can and should be facilitated through the utilization of culturally tailored decision-aids that emphasize a shared-decision making process as recommended by organizations such as the American Urological Association (Makarov et al. 2016), although these aids are limited for AAs (Stacey et al. 2017). Other practice implications for the primary care provider include knowing the referral specialist and priming the patient prior to the visit. The specialist should include specific details about what each procedure entails (e.g., sedation procedures). For all providers, attention to communication processes that facilitate the development of a trusting relationship with the patient will not only enhance a patient’s short-term understanding and treatment adherence but has the potential to improve patient satisfaction with long-term post-treatment outcomes. Attention to these recommendations has the potential to ameliorate the negative emotions experienced by PrCA patients and families following a PrCA diagnosis.