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Perceptions of care coordination in cancer patient-family caregiver dyads

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Abstract

Purpose

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

Methods

In this pilot cross-sectional study, 54 patient-family caregiver dyads completed a validated care coordination instrument (CCI) and its parallel family caregiver instrument (CCICG) 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.

Results

The overall family caregiver scores demonstrated a bimodal pattern; thus, we conducted analyses using aggregate data as well as by highCG and lowCG subgroups. Among dyads in the lowCG 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 lowCG subgroup. In item-level analyses, family caregivers in the lowCG subgroup reported lower scores than patients on the items related to patient-physician communication.

Conclusion

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.

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Availability of data and materials

The survey instruments used in this study are available by request from the corresponding author.

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Funding

This study was supported in part from a grant from the Hawaii Community Foundation, P30CA071789, and University of Hawaii Cancer Center.

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Authors and Affiliations

  1. University of Hawaii Cancer Center, 701 Ilalo St. 6th Floor, Honolulu, HI, 96813, USA

    Izumi Okado, Ian Pagano, Kevin Cassel & Randall F. Holcombe

Authors
  1. Izumi Okado
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  2. Ian Pagano
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  3. Kevin Cassel
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  4. Randall F. Holcombe
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Contributions

RFH, IO, and KC designed the study presented in the manuscript. IO administered surveys. IP conducted study analyses. All authors drafted, read, and approved the final manuscript.

Corresponding author

Correspondence to Izumi Okado.

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Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the University of Hawaii’s Institutional Review Board.

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Okado, I., Pagano, I., Cassel, K. et al. Perceptions of care coordination in cancer patient-family caregiver dyads. Support Care Cancer 29, 2645–2652 (2021). https://doi.org/10.1007/s00520-020-05764-8

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  • DOI: https://doi.org/10.1007/s00520-020-05764-8

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