Abstract
BACKGROUND: The quality of communication (QOC) questionnaire has been widely used to assess foundational aspects of patient-clinician communication about end-of-life (EOL) care. However, this instrument has never before been fielded with primary care patients who have cognitive impairment and their caregivers, a population with unique communication needs. DESIGN: We report on baseline data from a completed pilot study and ongoing efficacy trial of advance care planning involving dyads of primary care patients ages 80 and older with cognitive impairment and their family care partners. Two QOC subscales assessed ratings of general communication and EOL care communication from 0 ("worst") to 10 ("best"). Due to challenges piloting the EOL subscale, we integrated skip logic to improve cognitive accessibility and measurement precision. Participants were first asked whether EOL communication occurred (yes/no); those responding affirmatively were subsequently asked to rate communication. We report experiences with EOL subscale adaptations from our ongoing trial (NCT04593472). RESULTS: Using the original instrument in our pilot (13 dyads), mean patient and family general communication ratings were similar (9.65 and 9.60, respectively), but EOL ratings diverged (4.23 and 5.88, respectively), and "Don't Know" comprised 5% of patient and 32% of family responses. Interviewers reported patient and family participants expressed confusion when asked to rate EOL communication behaviors that had not occurred. Using the adapted instrument in our efficacy trial (43 dyads), EOL communication behaviors were most often reported as not having occurred (76% of patient and 73% of family responses across all items). Mean patient and family EOL subscale ratings were similar (2.23 and 2.26) and responses of "Don't Know" were minimal (<1%). CONCLUSION: The original QOC EOL subscale involves rating conversations that rarely occur in primary care but are important for older adults with cognitive impairment. Subscale adaptations may reduce confusion and response uncertainty and improve measurement accuracy.