Cleo A Samuel1, Angela B Smith2, Wendi Elkins3, Jennifer Richmond4, Zahra Mahbooba5, Ethan Basch6, Antonia V Bennett7, Arlene E Chung8, Mattias Jonsson9, Ronald C Chen10, Bryce B Reeve11. 1. Department of Health Policy and Management, Gillings School of Glob1al Public Health and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, 1105F McGavran-Greenberg Hall, CB#7411, Chapel Hill, NC, 27599-7411, USA. cleo_samuel@unc.edu. 2. Department of Urology At University of North Carolina School of Medicine and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, 2115 Physicians Office Building, Chapel Hill, NC, 27599, USA. 3. Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 1105F McGavran-Greenberg Hall, Chapel Hill, NC, 27599, USA. 4. Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 302 Rosenau Hall, Chapel Hill, NC, 27599, USA. 5. Department of Radiation Oncology, University of North Carolina School of Medicine, University of North Carolina at Chapel Hill, 101 Manning Drive, Chapel Hill, NC, 27599-7235, USA. 6. Lineberger Comprehensive Cancer Center, University of North Carolina At Chapel Hill, 170 Manning Drive, Campus Box 7305, Chapel Hill, NC, 27599-7305, USA. 7. Department of Health Policy and Management, Gillings School of Global Public Health, and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, 1106A McGavran-Greenberg Hall, CB 7411, Chapel Hill, NC, 27599, USA. 8. University of North Carolina School of Medicine and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, 5034 Old Clinic Building, CB 7110, Chapel Hill, NC, 27599, USA. 9. Patient Reported Outcomes Core Facility, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 10. Department of Radiation Oncology, Lineberger Comprehensive Cancer Center and Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, 101 Manning Drive, Chapel Hill, NC, 27599, USA. 11. Department of Population Health Sciences, Department of Pediatrics, and Duke Cancer Institute, Duke University School of Medicine, Duke University, 215 Morris Street, Room 230, Durham, NC, 27701, USA.
Abstract
PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.
PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.
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