Decision-making preferences and regret in rectal cancer patients undergoing restorative proctectomy: A prospective cohort study

Abstract

BackgroundHow patients make treatment choices in rectal cancer is poorly understood and may affect long-term regret and satisfaction. The objective of this study is to characterize decision-making preferences and their effect on decisional regret in patients undergoing restorative proctectomy for rectal cancer. MethodsA prospective cohort study was conducted in a single academic specialist rectal cancer center from October 2018 to June 2022. Adult patients who underwent restorative proctectomy at least one year prior were recruited. Health literacy was assessed using the BRIEF instrument. Decision-making preferences regarding cancer treatment were assessed using the Control Preferences Scale. Decisional regret regarding their choice of restorative proctectomy was assessed using the Decision Regret Score. Bowel dysfunction was measured using the low anterior resection syndrome score. ResultsOverall, 123 patients were included. Health literacy was categorized as adequate in 63%, marginal in 25%, and limited in 12%. Patients with adequate health literacy were more likely to prefer a collaborative decision-making role compared with those with low health literacy (86% vs 65%, P = .016). Patients with incongruence between preferred and actual decision-making roles were more likely to report high regret (56% vs 25%, P = .003). Patients with major low anterior resection syndrome were also more likely to experience high regret compared with patients with no/minor low anterior resection syndrome (44% vs 25%, P = .036). ConclusionA significant proportion of patients with rectal cancer undergoing restorative proctectomy do not have a decision-making role that is congruent with their preferences, and these patients experience a high degree of regret.