A disconnect between expectations and outcomes appeared to drive treatment-related regret

More men with localized prostate cancer treated with surgery expressed regret about their choice of treatment five years later compared to those who chose radiotherapy or active surveillance, a prospective, population-based study found.

In a large cohort of 2,072 patients with prostate cancer, 16% of those undergoing surgery, 11% of those undergoing radiotherapy, and 7% of those undergoing active surveillance expressed treatment-related regret at five years, Christopher Wallis, MD, PhD, Mount Sinai Hospital, Toronto, Ontario, and colleagues reported in JAMA Oncology.

However, because treatment-related regret is influenced by functional outcomes, treatment modality was no longer significantly associated with treatment-related regret when analyzed within that context, the investigators added. For instance, a change in sexual function was significantly associated with regret whereas other functional outcomes including urinary incontinence and bowel symptoms were not.

“When you look at the magnitude of effect, it’s all about expectations both of how well the treatment is going to work and expectations of toxicity and the side effects patients expect to get,” Wallis told BreakingMED. “So, the big ’take-away’ for me here is that while the actual outcomes do have an influence on regret, regret is much more driven by patients’ expectations of their outcome, and that fits in more with the conceptual psychological model of regret being a disconnect between your expectations and your lived experience, and regardless of what that lived experience is, with appropriate counseling and [management of] pre-treatment expectations, regret is probably going to be unlikely,” he added.

The Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) study recruited men from five population-based Surveillance, Epidemiology and End Results (SEER) registries in the US.

“Patients completed mail surveys at baseline and 6 and 12 months and 3 and 5 years after diagnosis,” Wallis and colleagues explained. The main outcome was treatment-related regret.

Over half of the cohort (55%) was treated with surgery, 32% received radiotherapy, and 13% were assigned to active surveillance. Median age at diagnosis was 64 years (interquartile range (IQR), 59-69 years) and roughly 75% of the cohort was White.

At five years, 13% (95% CI, 14%-18%) of the overall cohort reported treatment-regret. Not surprisingly, treatment-regret was much more commonly expressed among patients who subjectively felt that either the effectiveness of the chosen treatment or related adverse effects were much worse than they had anticipated.

Compared to men who underwent active surveillance, men who underwent surgery were 2.4-fold more likely to express treatment regret at an adjusted Odds Ratio (aOR) of 2.40 (95% CI, 1.44-4.01) or radiotherapy at an aOR of 1.57 (95% CI, 1.11-2.22), Wallis and colleagues noted.

However, men who underwent radiotherapy were not more likely to express regret compared with men undergoing active surveillance at an aOR of 1.53 (95% CI, 0.88-2.66), they added.

The authors also found that patients with low and intermediate-risk disease who chose surgery were more likely to report regret than those who underwent active surveillance, but men who had high-risk disease and chose active surveillance or radiotherapy reported more regret.

Very similar results were also seen three years after undergoing treatment for their cancer.

“With very high pretreatment expectations, it’s possible that almost no outcome at the end is going to avoid regret so that to me suggests we have to do a better job of pretreatment counseling and make sure patients are properly informed before they make their treatment decisions so if they end up with side effects or don’t have the cancer outcomes they might have liked, if they have reasonable expectations, they are less likely to regret the choice that they made,” Wallis told BreakingMED.

Limitations of the study include the fact that the CEASAR study was not primarily designed to assess oncologic outcomes over the study interval.

Commenting on the findings, Randy Jones, PhD, RN, University of Virginia School of Nursing, Charlottesville, Virginia, noted that the study underscores how important counseling and shared decision-making are in the management of prostate cancer patients.

“There is a need for greater connections and better communication among patients, care-givers, and clinicians to allow open discussion, counseling and an understanding of realistic expectations and adverse effects that are possible during treatment,” he elaborated.

As Jones noted, factors that are associated with treatment regret are those that affect quality of life as well as relationships among patients, caregivers and clinicians.

“It is imperative for clinicians to be aware of patients’ comfort in the patient-clinician interaction,” he stressed, “[and]… to provide realistic treatment expectations,” he added.

Given that quality interactions between patients and their doctors are likely to decrease decisional regret, “it is well worth the time for clinicians to assess and address patients’ treatment concerns,” Jones added.

  1. Prostate cancer patients treated with surgery were more likely to express regret at five years than men treated with radiation or active surveillance.

  2. A disconnect between patient expectations and outcomes appeared to drive treatment-related regret more than other factors including treatment modality.

Pam Harrison, Contributing Writer, BreakingMED™

The study was funded by grants from the AHRQ, the PCORI, and the National Cancer Institute.

Wallis reported receiving personal fees from Janssen Canada.

Jones had no conflicts of interest to declare.

Cat ID: 25

Topic ID: 78,25,730,25,192,73,925

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