Metadata supporting the article: A randomized intervention involving family to improve communication in breast cancer care
Creators: name: Wolff, Jennifer L.
name: Aufill, Jennifer
name: Echavarria, Diane
name: Blackford, Amanda L.
name: Connolly, Roisin M.
name: Fetting, John H.
name: Jelovac, Danijela
name: Papathakis, Katie
name: Riley, Carol
name: Stearns, Vered
name: Zafman, Nelli
name: Thorner, Elissa
name: Levy, Howard P.
name: Guo, Amy
name: Dy, Sydney M.
name: Wolff, Antonio C.
Publisher: name: figshare
Year: 2021
Subjects: subject: Cancer
subject: 111710 Health Counselling
subject: FOS: Health sciences
subject: FOS: Health sciences
subject: 111707 Family Care

description: In this randomized trial, the authors examined effects of a communication intervention to engage family care partners on patient portal (MyChart) use, illness understanding, satisfaction with cancer care, and symptoms of anxiety.<br> <b>Data access</b>: The datasets that support the findings of this study are kept in institutional file storage on an internal server at the Johns Hopkins Bloomberg School of Public Health, and therefore are not publicly available in order to protect patient privacy. The data will be made available on reasonable request from the corresponding author for up to and including 5 years from publication of the related manuscript. For all data requests please contact: Dr Jennifer Wolff, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD. jwolff2@jhu.edu. <br> <b>Study approval and patient consent: </b>All study procedures, consents, and surveys were approved by the scientific review committee of the Johns Hopkins Kimmel Cancer Center and by the Johns Hopkins University School of Medicine institutional review board (IRB00129995). Oncology clinicians at participating clinics provided informed consent indicating their permission for the study team to contact their patients. Each patient and care partner dyad provided informed consent.<br> <b>Clinical trial registration number: </b>The associated trial is registered at ClinicalTrials.gov NCT03283553.<br> <b>Study aims and methodology: </b>Those living with serious illness commonly value, desire, and rely on family. However, family is typically overlooked in cancer care. Few interventions have explicitly assessed and supported patients’ preferences for engaging family in communication at the point of care. Many electronic health record vendors and care delivery organizations allow patients to share access to their patient portal account in a registration process through which a family “care partner” receives their own identity credentials (login/password). Shared (proxy) access to the patient portal may be particularly helpful in the context of cancer due to heavy reliance on family and the intense longitudinal demands of treatment. The authors developed a communication intervention for patients who attend oncology visits with family or other unpaid care partners. “Sharing in Care” sets forth a structured process to establish a shared visit agenda and clarify expectations about the role of family during in-person and electronic interactions with the care team. They hypothesized that appropriate engagement of care partners in electronic interactions through registration and use of shared access to the patient portal would reduce symptoms of anxiety while improving illness understanding and increasing satisfaction with cancer care. To test this hypothesis, they conducted a single-blind randomized trial of patients in active treatment for breast cancer and their care partners to examine between-group differences in study outcomes at 9 months. Patient-family dyads were recruited and randomly assigned to complete a self-administered checklist to clarify the care partner role, establish a shared visit agenda, and facilitate MyChart access (n=63), or to usual care (n=55). Interviews administered at baseline, 3, 9 (primary endpoint), and 12 months assessed anxiety (score of 3+ on the GAD-2), mean FAMCARE satisfaction score, and complete illness understanding (perfect score on 4 items). MyChart use was examined from time-stamped electronic interactions. For more details on overall study design, study procedures, intervention, measurements, participant characteristics and analysis, please read the related article. <b>Datasets that support the figures, tables and supplementary files in the article: </b> Dataset supporting figure 2, tables 1 and 3, and supplemental appendix A: Dataset <b>REDCap_SharingInCare_DATA.csv</b>, in .csv file format. <b>Dataset supporting table 2</b><b>:</b> Dataset <b>CCDA_MyChart_DATA.csv</b>, in .csv file format.<br> The data were gathered while examining the effects of a communication intervention to engage family care partners on patient health record portal (MyChart) use, illness understanding, and symptoms of anxiety in a population of patients with early stage and advanced breast cancer.