Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients
Open accessAbstract
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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Previous studies have demonstrated that when given an option, elderly patients, patients from lower socioeconomic backgrounds, and from black ethnicities tend to choose web-based or automated telephone interfaces for ePRO reporting compared to a mobile app interface.
“Indeed, previous studies have demonstrated that when given an option, elderly patients, patients from lower socioeconomic backgrounds, and from black ethnicities tend to choose web-based or automated telephone interfaces for ePRO reporting compared to a mobile app interface.23,36,37”
From Implementation of a remote symptom monitoring pathway in oncology care: analysis of real-world experience across 33 cancer centres in France and Belgium (2024) · cites this paper as [36]
The Results (page unavailable) say most participants selected the web-based ePRO system and Black patients were more likely than White patients to use the automated telephone system. The paper does not establish the claimed preferences among elderly or lower-socioeconomic-status patients, and its reported options were web and telephone, not a mobile-app comparator. (LLM, conf=0.85)
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- Authors
- Samuel, C. A., Smith, A. B., Elkins, W., Richmond, J., Mahbooba, Z., Basch, E., Bennett, A. V., Chung, A. E., Jonsson, M., Chen, R. C., & Reeve, B. B.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- Duke University (US)
- Corresponding author
- Samuel, Cleo A.
- ORCID
- Venue
- Quality of Life Research
- Published
- 2020-02-28
- Volume
- 30
- Issue
- 11
- Pages
- 3213-3227
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- PMC
- PMC9307105
- OpenAlex
- W3008559753
- Cited by
- 27
- References
- 52
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 8 · 2023: 7 · 2022: 5 · 2021: 1
- FWCI
- 1.17
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion)
- UNC Libraries
- Funders
- National Institute of Health National Cancer Institute (R01CA174453)
- National Cancer Institute (1 K01 CA218473-01A1)
- Robert Wood Johnson Foundation (73921)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
- Keywords
- electronic patient-reported outcomes, racial disparities, Black patients, bladder cancer, prostate cancer, symptom monitoring, user experience, perceived value, digital health literacy, patient satisfaction, health equity
- MeSH terms
- Patient Reported Outcome Measures, Race Factors, Urinary Bladder, Electronics, Humans, Male, Prostatic Neoplasms, Quality of Life
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