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Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey
Carmit K McMullen1, Joanna E Bulkley, Andrea Altschuler
11 Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon 2 Division of Research, Kaiser Permanente Medical Care Program, Oakland, California 3 Southern Arizona Veterans Affairs Health Care System and University of Arizona College of Medicine, Tucson, Arizona 4 Division of Nursing Research and Education, Department of Population Sciences, City of Hope, Duarte, California.
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).
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