e14036 Background: Family caregivers (FCGs) can play a key role in coordinating care for cancer patients. However, little is known about FCGs’ perspectives of care coordination (CC). In this cross-sectional study, we evaluated perceptions of CC in cancer patient-family caregiver dyads using the Care Coordination Instrument (CCI), a validated self-report measure with excellent psychometric properties. Methods: Patients receiving active treatment for cancer and their primary FCGs ( N = 54 dyads) completed the 29-item CCI (patient) and the CCICG (a parallel FCG version) at private oncology practices or hospital-based facilities from June to Sept. 2019. The CCI and CCICG assess overall perceptions of CC (Total) and across 3 domains: Communication, Navigation, and Operational. The CCICG includes a supplemental questionnaire that assesses the degree of caregiver CC involvement on a 4-point Likert scale. Mixed regression models were used to examine differences between patients and FCGs’ perceptions of CC and to identify predictors of dyadic differences on the CCI scores. Pearson’s correlation was used to evaluate associations between FCGs’ perceptions of CC and the degree of caregiver involvement. Results: CCICG Total scores demonstrated a bimodal distribution, representing FCGs’ perceptions of CC in distinct high and low subgroups; thus, all analyses were conducted by subgroups (highCG, lowCG). Overall, no dyadic differences were found in the highCG group on the CCI scores. However, in the lowCG group, FCGs reported poorer Total ( p < .01), Communication ( p < .01), Navigation ( p < .01), and Operational ( p < .05) scores than patients. Provider setting (private practices) and the absence of an identified patient navigator significantly predicted poorer FCG Total scores compared to patients’ perceptions ( p < .05). FCGs’ Total scores were inversely associated with the degree of caregiver involvement among FCGs in the lowCG group ( p < .05) but not among FCGs in the highCG group. Conclusions: Our findings demonstrate that a subgroup of FCGs has poorer perceptions of CC that differ significantly from patient perceptions and is most apparent for patients receiving treatment in a private practice setting and in the absence of a patient navigator. These FCGs report a high degree of caregiver involvement and may be providing additional CC support that is not recognized by cancer patients. These findings underscore the need for interventions to support FCG CC involvement as a member of the care team in order to improve the quality and value of patient-centered cancer care delivery.
On Becoming an Ally
