Helping patients navigate the immediate release of medical records: MedEd, a novel patient engagement technology.

BACKGROUND: Through online health portals, patients receive complex medical reports without interpretation from their healthcare provider. This study evaluated the usability of MedEd, a patient engagement tool providing definitions of medical terminology in breast pathology and radiology reports. METHODS: Individuals who underwent a normal screening mammogram were invited to complete semi-structured interviews where they downloaded MedEd and discussed their download experience. Acceptability, appropriateness, and feasibility of MedEd were evaluated. RESULTS: 143 individuals were invited to participate, and 14 semi-structured interviews were completed. Participants reported ease of downloading and navigating MedEd with concerns about privacy and others' abilities to download. Participants demonstrated high acceptability (mean 4.48/5, SD 0.95), appropriateness (mean 4.66/5, SD 0.83), and feasibility (mean 4.48/5, SD 1.04) scores. CONCLUSION: Participants expressed excitement for future use of MedEd and provided suggestions for improvements. Next steps include evaluating comprehension of real breast reports while using MedEd and expanding patient access.

Breast Cancer Surgery: A Qualitative Exploration of Concerns Over Time.

INTRODUCTION: As outcomes for breast cancer patients improve, addressing the side effects and distress of treatment can optimize survivorship. Although distress in breast cancer is well known in literature, there is a lack of information on how these concerns change through the phases of the cancer care continuum. Therefore, this study investigates the longitudinal trajectory of worry in patients with nonmetastatic breast cancer. METHODS: Female patients with newly diagnosed stage I-III breast cancer comprised a mixed-methods, longitudinal study at a cancer center from June 2019 to June 2023. Patients completed an open-ended survey regarding their top three concerns. Responses were obtained before surgery and two weeks, three, six, nine months, and one year postoperatively. Responses were qualitatively coded and analyzed to determine themes of cancer-related distress. RESULTS: Participants (n = 262) were aged an average 57.53 y (±12.54), 65.8% had stage I disease at diagnosis, and 91.1% were White. Responses revealed that patients' top three sources of concerns varied by treatment phase. Overall, patients were worried about their cancer diagnosis and the risk of recurrence. Preoperatively, patients were worried about treatment timeline, while postoperative concerns transitioned to physical appearance and surgical side effects. CONCLUSIONS: Breast cancer patients consistently reported worries about cancer diagnosis, recurrence, and metastasis as well as the side effects and fear of treatments. However, patient worry appeared to be intrinsically linked with their treatment phase. Therefore, support and interventions should be catered to reflect the changing patterns of patients' sources of distress to optimize breast cancer patients' quality of life.