Discordance Between Advanced Cancer Patients' Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care.

OBJECTIVE

We investigated patient-reported roles of families, physicians, and patients themselves in treatment decision making and whether discordance between perceived and preferred roles is associated with psychological distress and perceived quality of care among patients with cancer.

METHODS

We analyzed cross-sectional survey data from 599 adults with stage IV solid malignancy in Singapore. Stuart-Maxwell tests were used to compare patients' perceived and preferred roles in decision making. Types of discordance were categorized as follows: involvement at a lesser level than preferred, involvement at a greater level than preferred, and no change in patient involvement. Ordinary least squares regressions examined the associations between types of discordance and patient outcomes, controlling for patient characteristics.

RESULTS

Discordance between perceived and preferred roles was observed in 16% of patients. Amongst patients with discordance, 33% reported being involved at a lesser level than they preferred, 47% reported being involved at a greater level than they preferred, and 19% reported discordance where level of patient involvement did not change. Multivariable analyses showed that lesser involvement than preferred and discordance with no change in patient involvement were associated with poorer quality of physician communication (β = - 9.478 [95% confidence interval {CI} - 16.303 to - 2.653] and β = - 9.184 [95% CI - 18.066 to - 0.301]) and poorer care coordination (β = - 11.658 [95% CI - 17.718 to - 5.597] and β = - 8.856 [95% CI - 16.744 to - 0.968]) compared with concordance.

CONCLUSIONS

Most patients reported participating at their desired level. Despite this finding, our results suggest that involving patients at a lesser level than they prefer can lead to poorer perceived quality of physician communication and care coordination and that encouraging patient participation is a safe approach to minimizing poor outcomes.