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

Jennifer L. Wolff, Jennifer Aufill, Diane Echavarria, Ja Alah Ai Heughan, 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

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)127-136
Number of pages10
JournalBreast Cancer Research and Treatment
Volume177
Issue number1
DOIs
StatePublished - Aug 30 2019

Keywords

  • Breast cancer
  • Consumer health information
  • Electronic health records
  • Health information technology
  • Health literacy

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

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