Perceptions of care coordination in cancer patient-family caregiver dyads

To examine cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design.

In this pilot cross-sectional study, 54 patient-family caregiver dyads completed a validated care coordination instrument (CCI) and its parallel family caregiver instrument (CCI_CG) from June to September 2019. The sample available for analysis included data from 32 dyads, which included patients receiving active therapy for any cancer type and their primary family caregivers aged 18 years or older. Mixed regression models were used to examine dyadic differences.

The overall family caregiver scores demonstrated a bimodal pattern; thus, we conducted analyses using aggregate data as well as by high_CG and low_CG subgroups. Among dyads in the low_CG subgroup, family caregivers reported significantly lower scores than patients on the total CCI and the three CC domains: Communication, Navigation, and Operational. Caregiver gender, the absence of a patient navigator, and practice setting (hospital-based ambulatory) significantly predicted dyadic differences in the low_CG subgroup. In item-level analyses, family caregivers in the low_CG subgroup reported lower scores than patients on the items related to patient-physician communication.

A subgroup of family caregivers reported poorer perception of CC than patients, suggesting that those family caregivers and providers may benefit from intervention. Further understanding of patient-family caregiver dyads' perspectives of CC can inform development of strategies to integrate family caregivers into the cancer care team, develop effective CC interventions for family caregivers, and contribute to improved quality and value of cancer care.