Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey

Abstract

Background: Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups.

Objective: The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors.

Design: This was an observational study with a cross-sectional survey.

Settings: The study included members of Kaiser Permanente Northern California and Northwest health plans.

Patients: A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy.

Main outcome measures: The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category.

Results: The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p < 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001).

Limitations: Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare-eligible population), and non-English-speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time.

Conclusions: Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).

FIGURE 1

Survey response rates. *Found to be ineligible (dead, not rectal cancer, etc) after initial search (B), after wrong address and phone number (D), or after return of survey if patient reported no rectal cancer, no intra-abdominal surgery, and so forth (H).

FIGURE 2

Survivor reports. P values are shown after Bonferroni adjustment. AN = anastomosis; PO = permanent ostomy; TO = temporary ostomy.