Patient-Reported Roles, Preferences, and Expectations Regarding Treatment of Stage I Rectal Cancer in the Cancer Care Outcomes Research and Surveillance Consortium

BACKGROUND: Historically, stage I rectal cancer was treated with total mesorectal excision. However, there has been growing use of local excision, with and without adjuvant therapy, to treat these early rectal cancers. Little is known about how patients and providers choose among the various treatment approaches. OBJECTIVE: The purpose of this study was to identify patient roles, preferences, and expectations as they relate to treatment decision making for patients with stage I rectal cancer. DESIGN: This is a population-based study. SETTINGS: The study included a geographically diverse population and health-system-based cohort. PATIENTS: A total of 154 adults with newly diagnosed and surgically treated stage I rectal cancer between 2003 and 2005 were included. MAIN OUTCOME MEASURES: We compared patients by surgical treatment groups, including total mesorectal excision and local excision. Clinical, sociodemographic, and health-system factors were assessed for association with patient decision-making preferences and expectations. RESULTS: A total of 80% of patients who underwent total mesorectal excision versus 63% of patients who underwent local excision expected that surgery would be curative (p = 0.04). The total mesorectal excision group was less likely to report that radiation would cure their cancer compared with the local excision group (27% vs 63%; p = 0.004). When asked about their preferred role in decision making, 28% of patients who underwent total mesorectal excision preferred patient-controlled decision making compared with 48% of patients who underwent local excision (p = 0.046). However, with regard to the treatment actually received, 38% of the total mesorectal excision group reported making their own surgical decision compared with 25% of the local excision group (p = 0.18). LIMITATIONS: The study was limited by its sample size. CONCLUSIONS: The preferred decision-making role for patients did not match the actual decision-making process. Future efforts should focus on bridging the gap between the decision-making process and patient preferences regarding various treatment approaches. This will be particularly important as newer innovative procedures play a more prominent role in the rectal cancer treatment paradigm.