Jennifer L Wolff1,2, Jennifer Aufill3,4, Diane Echavarria3,4, JaAlah-Ai Heughan3,4, Kimberley T Lee5,6,7, Roisin M Connolly5,6,7, John H Fetting5,6,7, Danijela Jelovac5,6,7, Katie Papathakis5,7, Carol Riley5,7, Vered Stearns5,6,7, Elissa Thorner5,7, Nelli Zafman5,7, Howard P Levy5, Sydney M Dy3,5,6,4, Antonio C Wolff8,9,10. 1. The Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA. jwolff2@jhu.edu. 2. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 692, Baltimore, MD, 21205, USA. jwolff2@jhu.edu. 3. The Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA. 4. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 692, Baltimore, MD, 21205, USA. 5. The Johns Hopkins University School of Medicine, Baltimore, MD, USA. 6. The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA. 7. Department of Oncology, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, 201 N. Broadway, Viragh 10-289, Baltimore, MD, 21287, USA. 8. The Johns Hopkins University School of Medicine, Baltimore, MD, USA. awolff@jhmi.edu. 9. The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA. awolff@jhmi.edu. 10. Department of Oncology, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, 201 N. Broadway, Viragh 10-289, Baltimore, MD, 21287, USA. awolff@jhmi.edu.
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.
RCT Entities:
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 cancerpatients and care partners.
Entities:
Keywords:
Breast cancer; Consumer health information; Electronic health records; Health information technology; Health literacy
Authors: Jennifer L Wolff; Danny Scerpella; Kimberly Cockey; Naaz Hussain; Tara Funkhouser; Diane Echavarria; Jennifer Aufill; Amy Guo; Danetta H Sloan; Sydney M Dy; Kelly M Smith Journal: Am J Hosp Palliat Care Date: 2020-12-16 Impact factor: 2.500
Authors: Jennifer L Wolff; Jennifer Aufill; Diane Echavarria; Amanda L Blackford; Roisin M Connolly; John H Fetting; Danijela Jelovac; Katie Papathakis; Carol Riley; Vered Stearns; Nelli Zafman; Elissa Thorner; Howard P Levy; Amy Guo; Sydney M Dy; Antonio C Wolff Journal: NPJ Breast Cancer Date: 2021-02-12
Authors: Sarah J Beesley; Alex Powell; Danielle Groat; Jorie Butler; Ramona O Hopkins; Ronen Rozenblum; Hanan Aboumatar; Allison M Butler; Jeremy Sugarman; Leslie Francis; Samuel M Brown Journal: Crit Care Med Date: 2022-02-01 Impact factor: 9.296