Unpacking cancer patients' preferences for information about their care

Abstract

ABSTRACTObjective: Patient-centered decision making requires cancer patients be actively involved and feel sufficiently informed about their care, but patients' preferences for information are often unrecognized or unmet by their oncologist, particularly for more distressing topics. This study examined cancer patients' preferences for information about three care-related topics: (1) diagnostic information, (2) treatment costs, and (3) prognosis. We tested whether factors known to influence information preferences (psychological distress, control preferences, and financial distress) were differently associated with information preferences for each topic. Methods: Cancer patients (N = 176) receiving ongoing treatment completed a questionnaire that assessed their out-of-pocket treatment costs, psychological distress, preferences for control over their medical decisions, and the amount of information they desired and received from their oncologists about the three topics. Results: Patients' preferences were less often met for treatment cost information than for the other topics, p < 0.001, with half wanting more cost information than they received. One-third of patients also wanted more prognostic information than they received. Patients' preferences for diagnostic information did not differ as a function of financial burden, distress, or control preferences, ps > 0.05. Preferences for cost information were greater among patients who preferred more control over their medical decisions, p = 0.016. Patients' preferences for prognostic information were greater among those desiring more control and with lower distress, ps < 0.05. Financial burden was not associated with information preferences. Conclusion: Appreciating the variability in information preferences across topics and patients may aid efforts to meet patients' information needs and improve outcomes.