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Sharing in care: engaging care partners in the care and communication of breast cancer patients

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Abstract

Purpose

Family is often overlooked in cancer care. We developed a patient–family agenda setting intervention to engage family in cancer care communication.

Methods

We conducted a pilot randomized controlled trial (NCT03283553) of patients on active treatment for breast cancer and their family “care partner.” Intervention dyads (n = 69) completed a self-administered checklist to clarify care partner roles, establish a shared visit agenda, and facilitate MyChart patient portal access. Control dyads (n = 63) received usual care. We assessed intervention acceptability and initial effects from post-visit surveys and MyChart utilization at 6 weeks.

Results

At baseline, most patients (89.4%) but few care partners (1.5%) were registered for MyChart. Most patients (79.4%) wanted their care partner to have access to their records and 39.4% of care partners reported accessing MyChart. In completing the checklist, patients and care partners endorsed active communication roles for the care partner and identified a similar visit agenda: most (> 90%) reported the checklist was easy, useful, and recommended it to others. At 6 weeks, intervention (vs control) care partners were more likely to be registered for MyChart (75.4% vs 1.6%; p < 0.001), to have logged in (43.5% vs 0%; p < 0.001) and viewed clinical notes (30.4% vs 0%; p < 0.001), but were no more likely to exchange direct messages with clinicians (1.5% vs 0%; p = 0.175). No differences in patients’ MyChart use were observed, but intervention patients more often viewed clinical notes (50.7% vs 9.5%; p < 0.001).

Conclusions

A patient–family agenda setting intervention was acceptable and affected online practices of cancer patients and care partners.

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Notes

  1. MyChart ® is a registered trademark of Epic Systems Corporation.

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Acknowledgements

The authors thank the following individuals without whom the study would not have been possible: Leena Aurora, Aamna Kabani, and Amy Guo for data collection; and the patients, care partners, and clinicians who participated in the study.

Funding

This study was supported by: Susan G. Komen Scholar Grant SAC170001 (ACW), 5R21AG049967 (JLW), P30CA006973, and P30AG048773. The sponsor of this research was not involved in study concept or design, recruitment of subjects, acquisition of data, data analysis or interpretation, or in the preparation of this manuscript.

Author information

Authors and Affiliations

  1. The Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA

    Jennifer L. Wolff, Jennifer Aufill, Diane Echavarria, JaAlah-Ai Heughan & Sydney M. Dy

  2. The Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Katie Papathakis, Carol Riley, Vered Stearns, Elissa Thorner, Nelli Zafman, Howard P. Levy, Sydney M. Dy & Antonio C. Wolff

  3. The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Vered Stearns, Sydney M. Dy & Antonio C. Wolff

  4. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 692, Baltimore, MD, 21205, USA

    Jennifer L. Wolff, Jennifer Aufill, Diane Echavarria, JaAlah-Ai Heughan & Sydney M. Dy

  5. Department of Oncology, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, 201 N. Broadway, Viragh 10-289, Baltimore, MD, 21287, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Katie Papathakis, Carol Riley, Vered Stearns, Elissa Thorner, Nelli Zafman & Antonio C. Wolff

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  1. Jennifer L. Wolff
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  2. Jennifer Aufill
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  14. Howard P. Levy
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  15. Sydney M. Dy
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  16. Antonio C. Wolff
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Corresponding authors

Correspondence to Jennifer L. Wolff or Antonio C. Wolff.

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The authors declare that they have no conflict 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 Informed consent was obtained from all individual participants included in the study.

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Wolff, J.L., Aufill, J., Echavarria, D. et al. Sharing in care: engaging care partners in the care and communication of breast cancer patients. Breast Cancer Res Treat 177, 127–136 (2019). https://doi.org/10.1007/s10549-019-05306-9

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  • DOI: https://doi.org/10.1007/s10549-019-05306-9

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