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

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.

Keywords: Breast cancer; Consumer health information; Electronic health records; Health information technology; Health literacy.

Conflict of interest statement

CONFLICT OF INTEREST

The authors declare that they have no conflict of interest.

Figures

Fig. 1.

Patient-Family Agenda Setting Checklist

Fig 2.

Sharing in Care CONSORT Diagram Weeks 1-68

Fig. 3.

Patient and Care Partner-Identified Visit Priorities from Agenda Setting Checklist aIntervention group only (n=69). P-values reflect statistical test of difference in whether each health issue was a priority for the visit (patient only, care partner only, both, neither).