PATIENT SELF-ADVOCACY IN DECISION MAKING RELATED TO POST-TREATMENT SURVEILLANCE FOR COLORECTAL CANCER

Purpose:   To understand patients’ desire for shared decision making and self-advocacy in their post-treatment surveillance for colorectal cancer following curative resection. 

Method: Colorectal cancer patients who were 6-months to 5-years following their curative resection and were fluent in English were recruited. Semi-structured interviews were audio-recorded and transcribed verbatim. At least two coders reviewed each transcript, assigned codes or descriptive labels to the text, and investigators met to reach consensus. Analysis included entering the coded text into tables with the rows for each participant and codes as columns to identify themes. Additional patient demographic information was obtained through a questionnaire included in the interview and clinical data was collected through the medical record.

Result: Of the 20 participants, 65% were male, 16% were married, and 50% had less than a college degree. The median time of surveillance was 15 months (inter quartile range=12-24). There was a clear disconnect between patients’ desire for shared decision making and lack of self-advocacy. For these patients, the lack of self-advocacy was based in the belief that the doctors know more and their role was “following instructions” and “to ask or try to understand as much" as they can. Even among patients who advocated for themselves, they expressed a similar sentiment. For example, one patient refused his chemo and stopped the infusions early, but also stated, “you try to be a good patient and understand why you need to be and what you need to report back.” The desire to be a “good patient” and “not cause trouble” seemed to feed into the belief that they must do exactly what their doctors told them even if it was an inconvenience. “For some reason, I have another appointment just to meet with Dr. X at 8:00 in the morning. I wish that could have been all today. I didn’t know my colonoscopy had been pushed to February 10th until this morning. Now I have to try to fit this in also.”

Conclusion: Patients’ desire a more active role in decision making, but clearly would benefit from additional education on colorectal cancer surveillance following curative resection. Interventions are needed to increase patients’ knowledge about colorectal cancer surveillance, which may result in patients feeling confident enough to advocate for themselves.