Sample characteristics

A description of the characteristics of patients is presented in Table 2. Of the 43 patients, 30% were Asian American (5 Chinese, 3 Filipino, and 5 Other Asian American, including Asian Indian, Japanese, South Asian, Vietnamese, and one participant who did not specify their ethnic group), 23% were Black, 23% were Hispanic/Latino, and 23% were White. Approximately half (44%) of patients were diagnosed between age 50–59. Most patients were US-born (63%), married (79%), completed college or more (54%), employed (56%), had annual household income of ≥$100,000 (47%%), and had private health insurance (61%). Less than half (44%) of the sample opted for AS to manage their PCa. A description of the characteristics of the 15 participating physicians is presented in Table 3. Of the 15 physicians, the mean age was 44.6 years (SD 8.0), with an average of 12 years (SD 8) of practicing medicine. The majority were male (80%) and White (53%), and approximately half worked in community settings (47%). Most of the physicians in our sample were urologists, though 1 respondent specialized in trauma recovery.

Table 2 Demographic characteristics of patients with low-risk prostate cancer recruited from the Greater San Francisco Bay Area between 2018–2019 (N = 43)Table 3 Demographic and practice characteristics of a sample of physicians treating low-risk prostate cancer patients in the Greater San Francisco Bay Area (N = 15)

Main findings of the study are summarized in Table 4 and described below. Generally, our analysis did not reveal meaningful racial or ethnic differences in descriptions of clinical factors associated with decision making.

Table 4 Factors influencing treatment decisions among low-risk prostate cancer patients in the Greater San Francisco Bay Area according to patients and physiciansTheme 1: age and stage of life

Patients and physicians shared a consensus that older patients preferred AS, and that younger patients expressed a wider range of treatment preferences.

We observed agreement between patients and physicians on how older patients (late 60s and beyond) with low-risk PCa approached treatment decisions. In general, these patients described a preference for less invasive options irrespective of health status. For instance, a patient contrasted how his current stage of life influenced his treatment decision with what he would have done at a younger age. “At my age and where I am – I’m semi-retired. There was not a driving need to cure this at all costs… Had I been younger, I think I might have accepted a more aggressive approach.” (study ID: 50014). Another patient mentioned comorbidities at older ages and higher risk of death from other causes as drivers of treatment decisions. Specifically, his belief that other health conditions posed a greater risk than the indolent malignancy of low-risk PCa led him to favor AS. “If their cancer is low grade and they know about positive calls…, then they should go on active surveillance…Why go through something that is so that dramatic when you know your high blood pressure, weight, could kill you before that? So, you got to consider, your health, your age and all this other stuff.” (50102). Similarly, physicians observed that older patients with low-risk PCa favored less radical options. One physician shared that it was common in their practice: “I’ve had several patients who are in their late sixties, very sexually active, very healthy overall and they have low-volume Gleason 3 + 4, and then I do genomic analysis and it is still borderline and they’ll do almost anything to avoid having surgery or radiation.” (6011). Another physician portrayed the case of a patient discussing different options and how considerations around age and life expectancy helped him to determine the preferred choice:

“He’s older (70s), he doesn’t have a long-life expectancy, he’s a low-risk disease patient, and approach it just the way I spoke before. I talked to him about the risk stratification, the Gleason scoring, and all the potential treatment options. And then, for him, we really talk about that active surveillance for him in terms of all of his other competing comorbidities and medical disease and life expectancy, just makes the most sense.” (6004).

In contrast, patients and physicians both described that younger patients (50s-low 60s) had more variation in their treatment preferences. Some younger patients preferred definitive treatments because they were healthy, had less comorbidities, and could deal with complications at their current age more easily than at an older age. A patient mentioned: “A healthy person like me, only 60, I take action, not active surveillance. Because surgery is not easy, … the older you are, the harder recovery from incontinence. Your muscle’s weak, everything weaker, you know what I mean?” (50215). Physicians also described younger patients who preferred definitive treatments, specifically expressing concerns about the long duration of an AS protocol coupled with beliefs that immediate treatment would help to prolong their lives: “For this patient, I think they come at it very similarly to us in that, they’re hesitant about active surveillance at that age. Because, they see the time horizon being as long as 25, 30 years, right? So, I think because of that, they’re also thinking about their kids and being around for them.” (6009).

Other younger patients preferred less invasive treatments. One patient recalled, “I just thought it was less invasive and I thought I was young enough where I didn’t have to do a full removal, like I still got time left. I don’t think I want to do that right now and I wasn’t really into doing the everyday radiation thing, so I chose to do the brachytherapy.” (50047). This patient’s decision-making was influenced by his perception that he could have many years to live with a potentially mild disease and could delay more aggressive treatment options for the future. These perspectives were also observed in physician interviews, with one physician stating, “In general, younger patients with low grade disease tend to favor either active surveillance or possible brachytherapy. They tend to shy away from radical prostatectomy in my practice.” (6005). Another physician echoed this point of view and emphasized the role of patients’ educational attainment, lifestyle, age, and social obligations in treatment decision-making: “So those are usually the well-educated, kind of younger groups who really want to preserve their erectile function as well as urinary function.” This physician then added an example of one patient:

“When I made the recommendation of active surveillance, he felt that it was a really good and appropriate recommendation, understanding that this would help preserve his erectile function as well as his functional mobility. He didn’t really want to take time from work, off of work. He didn’t foresee wanting to lose time in his triathlon training and didn’t want to go through the recovery process that a surgery would entail.” (6014).

Theme 2: side effects

There was widespread agreement between patients and physicians that side effects were very important for treatment decision-making. We uncovered three distinct ways in which side effects influenced decision making: fear of side effects, the influence of side effects from past medical encounters, and the intersection of family opinions with side effects. Specifically, patient considerations of side effects were often trumped by the opinions of family members, who often desire survival above all else and equate the aggressiveness of a treatment with better survival.

The most common side effects mentioned by patients were the immediate disruptions to physical functioning following invasive treatment. One of the patients described: “I was concerned that prostate surgery or radiation would have side effects; incontinence, impotence, things like that. And I wanted to avoid those if I could.” (50014). Patients also described how concerns about side effects which were more distal to treatment influenced their treatment decision-making. As one patient said, “Rumor has it that chemotherapy has serious side effects. People said so. I am not really sure about it. Hair loss, loss of appetite, nausea, I don’t want that.” (50158). Though the side effects might not be long lasting, his concerns about them were unpleasant enough to make him hesitate to receive these treatments. Patients also talked about the possibility of presenting long-term side effects that could even evolve over time. One patient shared:

“So I went to see another doctor that’s doing radioactive material implants. … And I came to discover that, for those treatments, the side effects were maybe minimal at the beginning, but it gets worse with time, like receiving radiation, and just start with feeling weird at the implanted area. And then maybe some discomfort as well. When the discomfort was minor, and then the sexual ability is almost unaffected. But then as time goes by longer, when the treatment has worn out, then the bad parts start to show up, and it’s not a good option to take.” (50170).

These comments reflect patients’ reluctance to procedures that could represent an additional burden to their health, and a preference for other potentially less detrimental treatment options. Physicians observed similar concerns about side effects for their patients. As one physician mentioned, “Patients are very reluctant to hear about the urinary and erectile misclaim, irritability with radiation as well as the incontinence with surgery.” (6014). Based on their own voices and on physicians’ perceptions, patients with low-risk PCa were aware and very cautious of the potential side effects they could face if receiving definitive treatment.

In addition to fears about future side effects, patients described how side effects from past treatments influenced their current decision-making. For example, patients talked about prior experiences within the healthcare system, especially procedures that had harmful consequences on their health. A patient commented:

“I had prostate surgery and it was because I was having, obviously, a lot of urinary infections. And I did not have the traditional method. I had the method that is done, I think, with laser and like that, it’s supposed to produce less waiting. As a result of it, I had numerous infections afterwards, and he [doctor] said something about I had excessive bleeding. For a surgery that was supposed to be minimal bleeding, it was a lot of bleeding, and I had to wear the apparatus for the urination and the blood for a lot longer than you normally wear it. I think I had that on for six weeks. I had three infections simultaneously on top of each other. So, it wasn’t successful, in my opinion…. So, I said, Great, ‘cause I really don’t want to go through another surgery and I’m still having the problems from the last surgery.” (50018).

Physicians also highlighted how patients’ treatment decision-making was influenced by negative experiences with previous medical procedures. One physician mentioned, “Now, importantly to note, the patient was very against re-biopsy. He did not enjoy his prior experience.” (6014). In this case, the physician did not describe concerns about side effects related to a radical treatment option. Rather, the physician reflected on a patient concern about “side effects” of future biopsies, a key component of AS.

In addition to concerns about physical side effects, many participants expressed worry about less tangible impacts of their treatment decision. Patients described their situations balancing their fear to experiencing painful circumstances on their bodies with family member’s desires for survival above any other consideration. A patient stated: “She [partner] didn’t care about the side effects. She wanted me alive, she didn’t care about side effects.” (50102). Another patient shared a similar experience, in which the partner believed surgery was the best alternative after a PCa diagnosis, despite of being low-risk: “And so I came prepared, and my wife pushed me to receive the operation. And I tried not to let her affect me… She wanted me to survive. She didn’t want other things.” (50170).

Theme 3: facilitators of meaningful clinical conversations about treatment

Finally, both physicians and patients described factors that made conversations about treatment decisions easier, though we observed minor differences in their descriptions of these factors. These factors included patient self-education and knowledge about PCa prior to the clinical encounter and the supportive role of family and friends.

Both physicians and patients mentioned the helpfulness of prior information and knowledge about PCa in facilitating conversations about treatment. Among physicians, there was broad sweeping sentiment that conversations about treatment were easier when patients were proactive about information gathering. Such sentiments from physicians included:

“I would say that the most challenging patients are the ones that don’t come in with a lot of information, where you’re doing a lot of the education and where they turn right back to you and say, ‘Well, what do you want me to do?’” (6001) and “[The patient] pre-educated himself, and it was the easiest conversation in the world because he was pre-educated.” (6008).

These physicians’ comments both suggest that lack of access to information led to more frustrating and challenging clinical conversations. Another physician noted:

“I don’t feel like we’ve had a two-way communication. I feel like I lectured and because of the lack of full medical literacy that this patient really didn’t’ make such an informed – I mean, I tried to inform him – but I’m not sure that he really understood.” (6004).

This physician’s description illustrates how a lack of information from patients not only hindered the clinical conversation, but also obfuscated consequences of treatment for the patient. Altogether, the importance of patient education and information gathering was abundantly observed across physician interviews. Although this sentiment was also expressed in the patient interviews, it was less common than was found in the physician interviews. One patient mentioned:

“[My doctor] told me it was a Gleason score of 3 plus 3 equals 6. I don’t think we had a detailed discussion at the time as to how that fit into other types of cancer. But the research that I’ve done, subsequent to that, makes it very clear the scale was 6 to 10.” (50012).

Though not explicit, this patient’s recollection of this conversation makes clear that prior knowledge and information gathering would have allowed for a more engaged conversation about his Gleason score.

Additionally, though both physicians and patients described a range of information sources (e.g., web-based, support groups), there was consensus about the importance of family and friends in supporting patients through the decision-making process. Many patients described the input of family and friends as bolstering physician recommendations. For instance, in describing his thought process as he was deciding between AS and definitive treatment, one participant stated:

“I was leaning… towards [active surveillance] until the second genomic testing results came back… It was then declared as more aggressive than the low-risk scenario, sort of borderline… Ultimately, my doctor said, “I’d recommend taking active measures” … That was also backed by another family friend who also factored in my age and said, ‘If you were my husband, I’d bully you to get something.’ So, I chose.” (50160).

For this patient, both his friend and physician advocating for treatment compelled him to get definitive treatment. The importance of consensus between physician recommendation and family advice was also noted by physicians. For instance, when asked how his patient felt about an AS recommendation, one physician stated:

“He was thrilled about it… But it is really important to have the family members on the same page, because I think having your wife telling you every day that you should get treated can probably wear on guys and grind them down.” (6015).

This physician’s comments were echoed by others in the sample and represents an understanding of the importance of involving family members in the treatment decision-making process. Physicians also noted instances in which family members forced certain treatment options, usually more aggressive ones. This physician recalled himself saying to a patient’s daughter:

“Yes, yes, cancer, but this cancer he could have never had any of this done, and he will probably die in 10–12 years naturally, and this won’t kill him. But no one will listen to me on this and everyone wants to know: what else can we do other than do nothing? So all this is going through the daughter, and then to the patient. So the conversation instead of being a 15 minute conversation, is a 30 plus minute conversation where I’m not even sure if the patient’s getting all the information from his daughter, which is really frustrating.” (6008).