Decisional involvement and information preferences of patients with hematologic malignancies

Abstract

Understanding decisional involvement and information preferences in patients with hematologic malignancies may help to optimize physician-patient communication about treatment decisions and align the decision-making processes with patients’ preferences. We described and examined factors associated with preferences of patients with hematologic malignancies for decisional involvement, information sources, and presentation of information. In a multicenter observational study, we recruited 216 patients with hematologic malignancies of any stage from September 2003 to June 2007. Patients were asked about their decisional involvement preferences (Control Preferences Scale), information sources (including most useful source of information), and preferences for their oncologists’ presentation of treatment success information. We used multivariate logistic regressions to identify factors associated with decisional involvement preferences and usefulness of information sources (physicians vs nonphysicians). Patient-directed, shared, and physician-directed approaches were preferred in 34%, 38%, and 28% of patients, respectively. Physicians and computer/Internet were the most common information sources; 42% perceived physicians as the most useful source. On multivariate analysis, patients with less than a college education (vs postgraduate education) were less likely to perceive their physician as the most useful source (adjusted odds ratio [AOR], 0.46; 95% confidence interval (CI), 0.21-1.00), whereas patients with acute leukemia (vs other blood cancers) were more likely to perceive their physician as the most useful source (AOR, 2.49; 95% CI, 1.07-5.80). In terms of communicating treatment success rates, 70% preferred ≥1 method(s), and 88% preferred presentation in percentages. Our study suggests that decisional involvement and information preferences vary and should be assessed explicitly as part of each decision-making encounter.

Influencing factors of lung cancer patients' participation in shared decision-making: a cross-sectional study

“…The results of this study suggested that patients with higher education actually participated to a greater extent and perceived importance of SDM on treatment and care [19]. Patients with low education level had di culty in understanding the complexities of medical science or even communicating with healthcare professionals, making it di cult for them to make the best choices.…”

“…Patients with a high level of education were more likely to receive disease-related information. Studies demonstrated that lung cancer patients would be very interested in the treatment and care process if they had access to su cient information (19,(25)(26).…”

“…These factors in uence the level and attitude of lung cancer patients to participate in SDM. Some studies have also explored the subjective factors that in uence cancer patients' participation in SDM, such as education level [19]. However, there is a gap in research exploring the factors that in uence Chinese lung cancer patients' participation in SDM.…”

Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers

“…These individuals generally felt confident interpreting complex information, and were prepared to ‘speak up’ to obtain further explanation from clinicians; nonetheless, limits to understanding were perceived as constraining their ability to make fully informed decisions. Loh et al 53 caution against predicting preference for decisional involvement of patients with haematological cancers, based on age or characteristics such as educational attainment, suggesting instead that this should be assessed periodically, as part of decision making encounters.…”

Palliative care of patients with haematological malignancies: strategies to overcome difficulties via integrated care

“…Discussions with patients regarding their thoughts about the risks and benefits of treatments and how they want to be involved in the decision making process are important to improve patient engagement with their care plan and understanding of their prognosis. Loh and colleagues 38 highlight that in patients with haematological malignancies, involvement in treatment decisions and information preferences (eg, how much information patients are given and how it is provided) vary, and they recommend that these be assessed routinely. Patients with a high risk of mortality but nonetheless a small chance of being cured should be made aware of both possible courses of the disease and treatment.…”