Colorectal cancer survivors' needs and preferences for survivorship information.

Abstract

6073 Background: We assessed colorectal cancer (CRC) survivors’ needs and preferences for information to guide development of a survivorship care plan. Methods: We conducted a survey of survivors treated for stage I-III CRC at two hospitals in New York City. Participants completed treatment 6-24 months before the interview and had not received a survivorship care plan. We evaluated whether survivors knew their basic treatment history, whether they understood ongoing risks, and their preferences for receiving survivorship information. Results: 175 CRC survivors completed the survey between June 2010 and November 2011. Survivors generally remembered basic information about their diagnosis and treatment: 88% accurately reported the location of their cancer; 95-100% accurately reported whether they had surgery, chemotherapy, or radiation; and 90-95% correctly reported the completion date (within 6 months) for each treatment. Survivors knew less about the risks of local and distant recurrences (69% and 77% correct, respectively) and of getting another CRC compared to unaffected individuals (40% correct). More than three quarters of participants received information about their cancer, their treatment history, ongoing oncology visits, and testing to be done by the oncologist (77-86% across categories). Across these categories of information, 93-99% of those who received information found it useful. Most survivors did not receive information about symptoms to report to their doctors, returning to work, financial issues, or legal issues (59-95% across categories); but those who received this information found it useful (67%-100% across categories). Conclusions: Even without receiving survivorship care plans, CRC survivors generally understood their cancer diagnosis and treatment. However, many lacked knowledge of ongoing risks, prevention, and nonmedical survivorship issues. Most survivors found the survivorship information they received useful. The greatest benefit of survivorship care plans to survivors may not be summarizing past care as much as helping survivors understand their risks and plan for the future.