PATIENT-REPORTED ROLES, PREFERENCES, AND EXPECTATIONS REGARDING TREATMENT OF STAGE I RECTAL
CANCER IN THE CANCER CARE OUTCOMES RESEARCH AND SURVEILLANCE CONSORTIUM (CANCORS)
Authors: C. Tyler Ellis, MD, MSCR1, Mary E. Charlton, Ph.D2, Karyn B. Stitzenberg, MD, MPH3
1
Department of Surgery, University of North Carolina
2
Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA
3
Department of Surgical Oncology, Lineberger Comprehensive Cancer Center, University of North Carolina
BACKGROUND: Historically, stage I rectal cancer was treated with total mesorectal excision (TME). However, there
has been growing use of local excision (LE), with and without adjuvant therapy to treat these early rectal cancers.
Little is known about how patients and providers choose amongst the various treatment approaches.
OBJECTIVE: To identify patient roles, preferences and expectations as they relate to treatment decision-making for
patients with stage I rectal cancer.
DESIGN AND SETTINGS: Geographically diverse population and health-system based cohort study.
PATIENTS: 154 adults with newly diagnosed and surgically treated stage I rectal cancer between 2003-2005.
MAIN OUTCOME MEASURES: We compared patients by surgical treatment groups: (1) TME and (2) LE. Clinical,
sociodemographic, and health-system factors were assessed for association with patient decision-making
preferences and expectations.
RESULTS: 80% of TME patients vs. 63% of LE patients expected that surgery would be curative, p=0.04. The TME
group was less likely to report that radiation would cure their cancer compared to the LE group (27% vs 63%,
p=0.004).
When asked about preferred role in decision making, 28% of TME patients preferred patient-controlled decision
making compared with 48% of LE patients, p=0.046. However, with regard to the treatment actually received, 38%
of the TME group reported making their own surgical decision compared to 25% of the LE group, p=0.18 (Figure).
CONCLUSIONS: Patients’ preferred decision-making role did not match the actual decision-making process. Future
efforts should focus on bridging the gap between the decision-making process and patients’ preferences of various
treatment approaches. This will be particularly important as newer innovative procedures play a more prominent
role in the rectal cancer treatment paradigm.
Figure. Patient Responses to Questions about Decision-Making Role Reported
and Preferred by Patients.
I. Patient Preferred Decision-Making Role
70%
p-value 0.046
Response (%)
60%
50%
40%
30%
20%
10%
0%
Preferred PatientControlled Decision
Preferred Shared
Decision-Making
TME
Preferred DoctorControlled Decision
Don't Know
LE
II. Patient Reported Decision-Making Role
70%
p-value 0.18
Response (%)
60%
50%
40%
30%
20%
10%
0%
Patient-Controlled
Decision
Shared DecisionMaking
TME
Doctor-Controlled
Decision
Don't Know
LE
Shown are the responses of patients with stage I rectal cancer by surgical treatment type: total
mesorectal excision (TME) or local excision (LE). Preferred role in the decision-making process
reported by patients (Panel I). Actual role in the decision-making process reported by patients
(Panel II).