Background
Eliciting cancer survivors’ priorities is essential to address the specific needs of cancer survivor subgroups.
Objective
To describe long-term rectal cancer survivors’ greatest challenges related to treatment.
Design
Observational study with cross-sectional survey.
Setting
Members of Kaiser Permanente, Northern California and Northwest health plans.
Patients
A survey was mailed to long-term (≥5 years post diagnosis) rectal cancer survivors who had an anastomosis, temporary ostomy, or permanent ostomy.
Main Outcome Measures
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 X2 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. Respondents’ greatest challenges 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 health care 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, respectively). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p=0.0001).
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 rectal cancer survivors, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during treatment decision-making.
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.