Colorectal Cancer Survivors Prefer More Information on Late Effects of Treatment and Recurrence Risks

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Survivors of nonmetastatic colorectal cancer, when surveyed about their needs and preferences for survivorship information, responded that they would prefer receiving more information about late effects of treatment, challenges to expect, general health maintenance, and risks of recurrence. Most of those surveyed indicated that they would like to receive survivorship information early on; 59% volunteered that they would have like to receive survivorship information during treatment and another 21% said that preferred to receive such information immediately after treatment.

The survey was designed “to evaluate the information survivors may need and want from a survivorship care plan,” according to an article in the Journal of Oncology Practice. The Institute of Medicine proposed the use of survivorship care plans, containing personalized cancer treatment summaries, as well as recommendations for ongoing care from oncologists, primary care or other providers, to improve coordination of care and promote optimal post-treatment care.

A telephone survey was completed by 175 patients identified through hospital databases and medical records from two New York metropolitan area hospitals, Memorial Sloan Kettering Cancer Center (170 patients) and Queens Cancer Center (5 patients). Patients were 18 years or older at the time of diagnosis with stage I to III colorectal cancer and had completed treatment 6 to 24 months before and had not received a survivorship care plan.

Key Findings

Most survivors knew whether their disease was in their colon and rectum, and close to 100% knew the types of treatment received. Fewer survivors knew their risks of local recurrence (69%), distant recurrence (77%), or developing a new colorectal cancer (40%).

“Most respondents reported receiving information about the importance of visiting an oncologist (77%), the need for tests to monitor for recurrence (82%), and information about diet and exercise (66%),” the researchers reported. “Only 38% reported being told of the importance of visiting a primary care provider after treatment completion.” The investigators found this “troubling.”

“If oncology providers are not providing this information to survivors, it may, in part, indicate a confidence on the part of the oncologist that survivors are already being seen by a primary care provider,” they continued. “Nevertheless, coordinated post-treatment care depends on active participation of both oncology and primary care providers to ensure comprehensive, nonduplicative care.”

Survey questions about additional types of information survivors would have liked to receive elicited 62 comments about late effects and challenges to expect, 22 comments concerning general health and diet issues, and 12 about recommended follow-up and tests. Asked to identify one of more preferred ways get information about survivorship, 93% said in a conversation with their doctor, 75% from a personalized printed document, and 61% from a website.

“In the absence of [a survivorship care plan], [colorectal cancer] survivors still generally understood their cancer history. However, many lacked knowledge of ongoing risks and prevention,” investigators concluded. ■

Salz T, et al: J Oncol Pract. June 3, 2014 (early release online).

In the Literature is compiled and written for The ASCO Post by Charlotte Bath.