Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients

• Published in: Quality of life research 2021-11, Vol.30 (11), p.3213-3227
• Main Authors: Samuel, Cleo A., Smith, Angela B., Elkins, Wendi, Richmond, Jennifer, Mahbooba, Zahra, Basch, Ethan, Bennett, Antonia V., Chung, Arlene E., Jonsson, Mattias, Chen, Ronald C., Reeve, Bryce B.
• Format: Article
• Language: English
• Subjects: Attitude surveys; Automation; Clinical outcomes; Medicine; Medicine & Public Health; Patients; Prostate cancer; Public Health; Quality of Life Research; Sociology; Special Section: Feedback Tools; User experience
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-020-02442-4

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.