A recent paper from a large Swedish research group has addressed patient satisfaction and the management of localized prostate cancer — with a specific, inclusive focus on the satisfaction of men initially managed on active surveillance.
High quality, multi-center studies on patient satisfaction among prostate cancer patients are few and far between. In 2015, Bergengren et al. conducted a detailed survey of patient satisfaction among > 1,200 men — all 70 years of age or younger — diagnosed with localized prostate cancer in Sweden in 2008. The goal was to explore the overall satisfaction of these men with their care over time.
Over 1,700 men were initially invited to participate in this survey based on data from the National Prostate Cancer Register of Sweden.
Here are some of the core study findings:
- 1,288/1,720 men (74.9 percent) actually responded to the survey — which is an astonishingly high response rate.
- High overall satisfaction with care (OSC) was reported by 958/1,288 respondents (74.4 percent).
- Some very clear factors factors were associated with high OSC, including
- High participation in the decision-making process (odds ratio [OR] = 4.18)
- Receiving greater amounts of information (OR = 11.1)
- Being given high-quality information (OR = 7.85)
- Access to a nurse navigator (OR = 1.80)
- Better functional outcomes — defined as 25 points higher on the EPIC-26 questionnaire (OR = 1.34)
- OSC was not affected by whether a doctor or a specialist nurse conducted follow-up.
- The above study findings were similar across the various treatment groups.
- Patients who had elected to have immediate, initial treatment (by radical prostatectomy or by radiation therapy)
- Reported high OSC more often than men on active surveillance
- 78.2 percent for men treated by radical prostatectomy
- 84.0 percent for men treated by radiation therapy
- 72.6 percent for men on active surveillance
- Reported high participation in decision-making
- 70.5 percent for men treated by radical prostatectomy
- 64.5 percent for men treated by radiation therapy
- 49.2 percent for men on active surveillance
- Reported having received more information
- 40.5 percent for men treated by radical prostatectomy
- 45.8 percent for men treated by radiation therapy
- 28.6 percent for men on active surveillance
- Reported lower levels of belief they would die from prostate cancer
- 3.8 percent for men treated by radical prostatectomy
- 3.9 percent for men treated by radiation therapy
- 8.0 percent for men on active surveillance
- Reported high OSC more often than men on active surveillance
Bergeron and his colleagues conclude that:
Information and participation in decision-making, as well as access to a nurse navigator, are key factors for OSC, regardless of treatment. Men on [active surveillance] need more information about their treatment and need to participate more in decision-making. OSC was as high among men who had nurse-led follow-up as among men who had doctor-led follow-up.
These findings all seem to correlate closely with what your sitemaster has been observing in discussions with patients in the recent past (and particularly patients in the USA):
That as we have been transitioning from standard invasive therapeutic treatment for men with low-risk, localized prostate cancer to the more appropriate use of initial monitoring followed by invasive treatment when necessary, we have yet to be able to necessarily explain well enough to patients on active surveillance
- “What is going on” and
- Why being on AS is actually a very good idea indeed for them, because they are going to be able to “avoid” or “defer” all of the potential side effects of immediate treatment until it is clear that treatment is actually necessary and</strong
- Almost every patient who is initially monitored on active surveillance will be able to have effective, curative therapy in due course should this become necessary (if they are properly monitored on AS)
The issue of the appropriate application of AS through the application of high-quality, patient-specific types of monitoring is clearly critical to all of this.
The other thing that your sitemaster believes is necessary to this will be much greater levels of knowledge about what patients on AS (along with input from their physicians) can be doing proactively to lower their individual risk for disease progression while they are on active surveillance. We hope to have much more to say about this topic over the next few years.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk, Treatment | Tagged: outcomes, patient, QOL, quality. life, satisfaction |
THE "NEW" PROSTATE CANCER INFOLINK 
Another Advantage of Active Surveillance for Prostate Cancer: Technology Advances
Thanks again very much Sitemaster for focusing on this insightful research.
Here is a suggested fourth bullet for what prospective AS patients and their loved ones need to know: Time on active surveillance is time for prostate cancer technology to continue to improve, with substantial improvements happening every year that further increase already impressive success in management of active surveillance, effectiveness of treatments and burdens of side effects. There are numerous examples of advancements that could be mentioned, by year, to make this credible to new patients.
A Questionable Potential Bullet But Key Truth for What Prospective Active Surveillance (AS) Patients Need to Know: The Great Strength of Evidence
To some of us, including me, the volume and balance of sound, credible evidence for a prostate cancer strategy, in this case active surveillance, means a lot, and there is an extraordinary abundance of such evidence supporting AS from many leading centers around the world, with a high degree of consistency. It should be a powerful selling point.
However, from interacting with fellow patients in support groups over many years, I have the impression that many of us are not so interested in evidence or able to assess it but are more eager to find an authoritatively expressed view, even when the evidence is not presented. Indeed, some of us find evidence confusing and not helpful, even serving to introduce doubt and confusion. After all, hardly any research has results that are 100% positive or 100% negative. Just consider the “controversy” over the value of screening with the PSA test as an example. To many patients, it becomes a “he said”, “she said” matter. Media reporters seem to strive for that approach without indicating the relative strength of support behind one position versus the other.
Some of those who inform us about prostate cancer take this into consideration. One leading medical oncologist with a practice dedicated to prostate cancer, Dr. Charles “Snuffy” Myers, published the newsletter Prostate Forum for many years, and it was packed with evidence-based thinking. In the early issues he often provided lists of references to medical research studies, but in later years he moved away from that, I believe after concluding that it was too much detail for most of the audience. Similarly, I’ve heard presenters at conferences for prostate cancer conferences, where attendees typically are eager for empowerment, state privately that they were toning down use of success graphs (non-recurrence, metastasis free, overall survival, etc.) because these graphs were hard to interpret for many in the audience.
It seems obvious that people coming to this site are hungry for evidence-based news. That is the salt that adds the savor to what Sitemaster focuses on. But I’m wondering about how to meet the evidence/authority needs of the various types of newly diagnosed patients who are eligible for active surveillance but struggling to figure out whether it is wise for them.