Unmet expectations in prostate cancer patients and their association with decision regret

Purpose Information about prostate cancer patients' experiences with their treatment is crucial to optimize shared decision-making. This study examined unmet expectations in prostate cancer patients and their association with decision regret. Methods We conducted a prospective, observational, multi-center study of men diagnosed with localized prostate cancer between 2014 and 2016. Questionnaires were completed at baseline (pre-treatment), and up to 12 months after treatment. Unmet expectations were reported as the proportion of patients who experienced side effects as worse than expected. Linear regression analysis was used to identify factors associated significantly (p <= 0.05) with unmet expectations and its association with decision regret. Results At 1-year follow-up, the majority of the patients (71%, 210/296) reported at least one unmet expectation. The proportion of patients who reported worse than expected erectile problems was 56%, recovery period = 29%, urinary problems = 28%, fatigue = 24%, and bowel problems = 17%. Unmet expectations were comparable between treatment groups, except for fatigue. A passive role in the decision-making process (eta squared (eta(2)) = 0.02) and higher scores on the decisional conflict scale (eta(2) = 0.02) were associated with more unmet expectations, and unmet expectations were associated with decision regret (eta(2) = 0.08). Conclusions Unmet expectations are common among men treated for localized prostate cancer. Involving patients in the treatment decision-making process and offering additional counseling to patients who indicate uncertainty about their decision, may help to avoid unmet expectations. Implications for Cancer Survivors The current study emphasizes the need for involving prostate cancer patients in the decision-making process in order to mitigate unmet expectations.