Purpose: To analyze the information desire of patients with advanced cancer at the point of decision making, the ability of the medical oncologist to accurately judge patient’s information desire, and patient’s perception of the information that was disclosed by the medical oncologist.
Method: Patients with advanced colorectal or breast cancer faced with the decision whether or not to pursue second-line chemotherapy were recruited for a prospective multicenter study. In addition to the usual treatment-related information from the medical oncologist, patients also received a decision aid from a nurse. This aid contained information on adverse events, tumor response, and survival. For each item, the nurse asked the patient whether the information was desired and whether it had been disclosed by the oncologist and the oncologist made a substitute judgment of the patient’s information desire on the inclusion form. The match between a patient’s information desire and the oncologist’s judgment of this desire was expressed in percentage agreement and agreement corrected for chance (κ).
Result: The decision aid was presented to 77 patients with a median age of 62 years (range 32-80), 38% were male, and 28% had college education or higher. Information on adverse events, tumor response, and survival was desired by 95%, 91%, and 74% of patients. The medical oncologists judged patient’s desire for information to be 100%, 97%, and 80%, respectively. There was a poor match between oncologist's judgment and patient's information desire for adverse events (95%, κ not applicable), tumor response (88%, κ=-0.045), and survival (63%, κ=-0.050). When asked whether the information was previously disclosed by the medical oncologist, 72%, 53%, and 28% of patients answered affirmatively.
Conclusion: Patients in this advanced cancer setting expressed a high information desire. The medical oncologists had accurately judged that the patients would desire much information, but on the individual level, their judgment of information desire on tumor response and survival was no better than could be expected by chance. According to the patients, the medical oncologists did not disclose all desired information, particularly on survival. The medical oncologists need to communicate more clearly with their patients. Decision aids, similar to those used here, have been shown to help doctors provide safe, effective, and timely information to patients.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making