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 (ß = - 9.478 [95% confidence interval {CI} - 16.303 to - 2.653] and ß = - 9.184 [95% CI - 18.066 to - 0.301]) and poorer care coordination (ß = - 11.658 [95% CI - 17.718 to - 5.597] and ß = - 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.

End of life experiences of patients with advanced cancer in Myanmar: Results from the APPROACH study.

BACKGROUND: Access to palliative care services is essential for attaining universal health coverage for patients with a terminal cancer. Despite this, many patients with advanced cancer in low-income countries, such as Myanmar, suffer at the end of life (EOL) due to little or no access to palliative care. However, actual evidence on EOL experiences of cancer patients in Myanmar is lacking. This paper aims to describe various dimensions of EOL experiences among patients with an advanced cancer from the largest public hospital in Myanmar. METHODS: We surveyed 195 patients with stage IV cancer seeking care from outpatient oncology clinics to assess their quality of life, pain severity, pain medications taken, quality of communication with doctors, nursing care and health care coordination, and desire to end life sooner. We assessed socioeconomic status (SES) differences in each patient outcome using separate multivariate linear/logistic regressions. RESULTS: Forty-one percent of the patients in our sample reported that they wish their life would end sooner. Low SES cancer patients had significantly worse quality of life, reported poor health care coordination and were more likely to report severe pain compared to high SES cancer patients visiting the same hospital. CONCLUSION: To improve quality of life and pain management and to reduce EOL distress among patients with advanced cancer, there is a pressing need to develop and invest in hospital and community-level palliative care services in Myanmar.