Patient and caregiver knowledge and understanding of acute myeloid leukemia and perceptions of oncologist communication quality.

Abstract

Acute myeloid leukemia (AML) is primarily diagnosed in older adults who rely on caregiver support. Oncologists must communicate complex information to both patients and caregivers. Associations between oncologist communication and patient and caregiver knowledge and understanding remain unknown. This cross-sectional secondary analysis utilized data from a pilot randomized decisional intervention trial. We assessed disease knowledge, prognostic understanding, and perceptions of communication quality for patients 60 or older with newly diagnosed AML and their caregivers. Disease knowledge was scored as the percentage correct on a 13-item investigator-developed AML questionnaire. Prognostic understanding was defined as patient or caregiver response concordance with oncologist multiple-choice estimates of cure probability and life expectancy. Patient perception of communication quality was assessed by the 36-item Patient-Centered Communication overall score (PCC-36-Ca) or six core function scores, and caregiver perception was assessed through the 6-item score (PCC-Ca-6). We summarized descriptive results and associations between the three measures using multivariable logistic regression models, adjusting for sociodemographic factors. We included 79 patients, 45 caregivers, and 8 oncologists. Disease knowledge (78% patients, 84% caregivers) and perception of communication quality (4.2/5.0 patients, 4.0/5.0 caregivers) were high while prognostic understanding was low. Patient-oncologist exact concordance was 28% for cure probability and 19% for life expectancy while caregiver-oncologist concordance was 39% and 24%. Communication quality generally was not significantly associated with disease knowledge or understanding, but PCC-36-Ca core functions of fostering healing relationships (aOR 3.00, p = 0.042) and making decisions (aOR 4.41, p = 0.008) were associated with cure probability understanding, while exchanging information (aOR 2.78, p = 0.046) was associated with life expectancy understanding. Patient PCC-Ca-36 and caregiver PCC-Ca-6 were associated (adjusted ß 0.45, p = 0.03). While patients and caregivers tended to have similar communication quality scores, quality did not translate to disease knowledge or prognostic understanding. Communication interventions should target relevant PCC-36-Ca core functions.