The Development of a Patient Decision Aid for Patients with Rectal Cancer

Abstract

Context: Rectal cancer treatment decisions involve tradeoffs between outcomes like living with a permanent stoma versus long-term bowel dysfunction. The needs of rectal cancer patients and practitioners to partake in shared decision making are unknown. For such a complex decision, a patient decision aid that prepares patients to make informed, values-based decisions is warranted. Methods: 1) A systematic review, to characterize the prevalence of long-term dysfunction 2) Needs assessments, conducted with rectal cancer patients and practitioners, 3) Development of a decision aid. Results: 1) Significant variability exists in reporting rectal cancer outcomes. The rate of bowel dysfunction is high. 2) Rectal cancer patients recall little of the outcomes discussed preoperatively. They do not perceive having any surgical options. Practitioners are inconsistently engaging patients in shared decision-making. 3) A patient decision aid was developed that a) incorporated systematic review results and; b) addressed the needs, barriers and facilitators raised. Conclusions: Shared decision-making in rectal cancer surgery is limited. A decision aid to improve patient decision-making was developed.