Patient and caregiver knowledge and understanding of acute myeloid leukemia and satisfaction with oncologist communication.

Abstract

e24104 Background: Acute myeloid leukemia (AML) is primarily diagnosed in older adults who often need caregiver support. Thus, oncologists need to communicate complex prognosis and treatment options to both patients and caregivers. However, satisfaction with oncologist communication and its impact on older adults and caregivers are not well-understood. Methods: This cross-sectional secondary analysis of a decisional intervention trial assessed disease knowledge, disease understanding, and communication satisfaction of patients ages 60 or older with newly diagnosed AML and their caregivers. Disease knowledge was defined as percent accuracy on an investigator-developed true/false quiz on AML risks and treatment. Disease understanding was defined as patient or caregiver response concordance with the oncologist’s multiple-choice estimates of cure probability and life expectancy. Communication satisfaction was assessed using the 36-item PCC-Ca-36 for patients or the 6-item PCC-Ca-6 for caregivers. PCC-Ca-36 includes six core functions: exchanging information, fostering healthy relationships, making decisions, responding to emotions, enabling patient self-management, and managing uncertainty. We summarized descriptive results of the 3 measures; multivariable logistic regression models assessed associations among measures, adjusting for sociodemographic factors. Results: We included 79 patients, 45 caregivers, and 8 oncologists. Disease knowledge was high (78% for patients and 84% for caregivers), but disease understanding was low. Patient-oncologist exact concordance was 28% for cure probability and 19% for life expectancy while caregiver-oncologist was 39% and 24%. While oncologists indicated only 3% of patients had > 50% cure probability, 38% of patients and 30% of caregivers responded as such. Similarly, oncologists indicated no patient had a life expectancy above 5 years, but 48% of patients and 30% of caregivers responded as such. Communication satisfaction was high with a mean PCC-Ca-36 of 4.2/5.0 (SD 0.6) for patients and a mean PCC-Ca-6 of 4.0/5.0 (SD 0.7) for caregivers. Patients scored the functions of enabling patient self-management (3.9/5.0) and managing uncertainty (3.9/5.0) the lowest. While communication satisfaction was not significantly associated with disease knowledge or understanding, the “making decisions” core function was positively associated with patient disease knowledge (p=0.06). Patient PCC-Ca-36 was positively associated with caregiver PCC-Ca-6 (p=0.03). Conclusions: While patients and caregivers had similar levels of satisfaction with oncologist communication, this satisfaction was not associated with disease knowledge or understanding. Communication interventions should focus on improving disease understanding and shared decision-making, enabling patient self-management, and managing uncertainty.