C-C4-02: Improving Survivorship Care for Long-Term Colorectal Cancer Survivors: Key Findings of a 5-Year Study

Aims: Understand the determinants of health related quality of life (HRQOL) and the lived experiences among colorectal cancer (CRC) survivors, and identify strategies to help maintain or enhance CRC survivors’ HRQOL. Methods: Mail survey and focus groups. Subjects were 283 ostomy and 392 anastomosis long-term CRC survivors within an HMO. Focus groups for subjects with ostomy were divided by gender and high and low HRQOL. Outcome measures were the modified City of Hope Quality of Life (mCOH-QOL)-Ostomy (abridged for anastomosis) and SF-36v2 questionnaires. The SF-6D scoring algorithm was used to calculate an overall HRQOL score from SF-36v2 data. Focus groups were conducted to explore ostomy-related barriers to effective self-care and adaptation strategies. Results: CRC survivors with an ostomy experienced multiple persistent HRQOL losses that differ between men and women. Women CRC survivors with ostomies, for example, reported more sleep disruption and fatigue than men. Living with an ostomy, co-morbidities, socioeconomic status, self-reported depression, and employment status were independent predictors of SF-6D scores. Among CRC survivors with ostomy, fistulas had important implications for HRQOL. Psychological wellbeing among CRC survivors was positively associated with income. Intestinal stomas significantly influenced spiritual HRQOL. Provision or withdrawal of a partners’ support affected both short- and long-term psychosocial adjustment of female CRC ostomy patients. Focus group participants identified dietary changes to control bowel output and odor, demands of coping and adjustment, and the time it took to accept the reality of daily living with an ostomy as significant challenges. Conclusions: The greatest challenges reported by CRC survivors confirmed the IOMs findings that survivorship is a distinct, chronic phase of cancer care, and that cancer effects are broad and pervasive. CRC survivors could benefit from dietary and behavioral interventions even 5+ years after their cancer surgery. Women with ostomies seem to do worse than men with ostomies and report a different profile of HRQOL challenges, including sleep disruption and fatigue. Depression screening and psychosocial interventions should be part of survivorship care for CRC patients. CRC survivors should be assessed for income and financial need. Survivorship care should aim at minimizing hospitalizations, depression, and ostomy-related complications among long- term CRC survivors.