What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey

SIMPLE SUMMARY: Growing evidence has underscored the importance of assessing patient values, i.e., who or what matters most, in treatment decision making, yet which factors are important to family caregivers remains understudied. Using data from a 2021 national survey of U.S. cancer caregivers, we examined factors that caregivers considered important when partnering with patients during cancer treatment decision making. Caregivers ranked 15 factors on a 4-point Likert-scale from ‘very unimportant’ to ‘very important’. The top 5 most frequently endorsed factors were patient quality of life, physical well-being, length of life, emotional well-being, and the opinions/feelings of oncology team. The endorsement of different factors as ‘very important’, particularly towards ‘opinions/feelings of the oncology team’ varied based on caregiver age, race, gender, and ethnicity. Future work is needed to determine how to best elicit and incorporate caregiver values and preferences into patient treatment decision making. ABSTRACT: Prioritizing patient values—who/what matters most—is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from ‘very unimportant’ to ‘very important.’ Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p’s < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially ‘opinions/feelings of the oncology team’. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.