Abstract 3431: What are the greatest challenges of rectal cancer survivors? Results of a population-based survey
Authors: Krouse Robert S. , Bulkley Joanna E. , Altschuler Andrea , Wendel Christopher S. , Grant Marcia , Hornbrook Mark C. , Sun Virginia , McMullen Carmit K. 
Published: August 2015

Abstract
Purpose: Rectal cancer (RC) survivors with and without permanent ostomy have similar health-related quality of life outcomes, though these may be driven by different factors. Identifying patient-centered concerns among survivors with different surgical reconstructions can guide treatment decision-making and optimize survivorship care.
Methods: We mailed a survey to long-term (≥5 years post-diagnosis) RC survivors enrolled in Kaiser Permanente (Northern California and Oregon/Southwest Washington). Participants with anastomosis, temporary ostomy, and permanent ostomy were asked an open-ended question about the “greatest challenge” they experienced related to their cancer surgery. Using a grounded theory approach, we identified all topics in the responses of 440 participants who wrote an answer (76% of 577 respondents). These topics were collapsed into codes and organized into domains. Responses were assigned as many codes as were applicable and double-coded by pairs of researchers who met to resolve any discrepancies. We used Bonferroni-adjusted chi-squares to test differences in the proportion of respondents within each surgical group who mentioned challenges in each domain.
Results: Greatest challenge responses were provided by 241 participants with anastomosis, 54 with temporary ostomy, and 145 with permanent ostomy. Respondents were more educated but otherwise they resembled non-respondents demographically and clinically. Respondents described seven challenge domains: 1) bowel dysfunction; 2) bowel self-care; 3) post-operative recovery; 4) complications and late-effects; 5) negative psychosocial impacts; 6) comorbidities and aging (unrelated to RC); and 7) negative health care experiences. The most commonly reported problems in each group were bowel dysfunction, negative psychosocial impacts, complications and late effects, and bowel self-care. Anastomosis and temporary ostomy groups provided similar response profiles, but there were some significant differences in the proportion of respondents in each group who mentioned challenges for each domain. Respondents with permanent ostomy were less likely to mention challenges with bowel management than either respondents with temporary ostomy (p = .0024) or anastomosis (p = .0003). Respondents with temporary ostomy reported more complications and late effects than those with permanent ostomy (p = .0009). Respondents with anastomosis were less likely to report negative psychosocial impacts than those with permanent ostomy (p = .0003).
Conclusions: We identified enduring concerns for long-term RC survivors that should be prioritized in survivorship care. Patients choosing among surgical options should know that long-term bowel dysfunction, complications, and late effects are more common concerns for patients without permanent ostomy. In contrast, patients with permanent ostomy report the most negative psychosocial impacts.
Citation Format: Robert S. Krouse, Joanna E. Bulkley, Andrea Altschuler, Christopher S. Wendel, Marcia Grant, Mark C. Hornbrook, Virginia Sun, Carmit K. McMullen. What are the greatest challenges of rectal cancer survivors? Results of a population-based survey. [abstract]. In: Proceedings of the 106th Annual Meeting of the American Association for Cancer Research; 2015 Apr 18-22; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2015;75(15 Suppl):Abstract nr 3431. doi:10.1158/1538-7445.AM2015-3431