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

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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.

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Acknowledgements

We would like to thank Dana Mueller for her efforts in implementing the ePRO study in the NC Cancer Hospital Urology Clinic.

Funding

This work was supported by a National Cancer Institute (NCI) Supplement to R01CA174453 (PI: Reeve and Chen). Dr. Cleo Samuel’s effort was also supported by the NCI Mentored Research Scientist Development Award 1 K01 CA218473-01A1. Jennifer Richmond’s effort was also supported by a Grant from the Robert Wood Johnson Foundation Health Policy Research Scholars program (Grant no. 73921). This project made use of systems and services provided by the Patient-Reported Outcomes Core (PRO Core; pro.unc.edu) at the Lineberger Comprehensive Cancer Center of the University of North Carolina. PRO Core is funded in part by a National Cancer Institute Cancer Center Core Support Grant (5-P30-CA016086) and the University Cancer Research Fund of North Carolina. LCCC Bioinformatics Core provided the computational infrastructure for the project.

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Authors and Affiliations

  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 A. Samuel

  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

    Angela B. Smith

  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

    Wendi Elkins

  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

    Jennifer Richmond

  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

    Zahra Mahbooba

  6. Lineberger Comprehensive Cancer Center, University of North Carolina At Chapel Hill, 170 Manning Drive, Campus Box 7305, Chapel Hill, NC, 27599-7305, USA

    Ethan Basch

  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

    Antonia V. Bennett

  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

    Arlene E. Chung

  9. Patient Reported Outcomes Core Facility, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Mattias Jonsson

  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

    Ronald C. Chen

  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

    Bryce B. Reeve

Authors
  1. Cleo A. Samuel
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  2. Angela B. Smith
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  3. Wendi Elkins
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  4. Jennifer Richmond
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  5. Zahra Mahbooba
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  6. Ethan Basch
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  7. Antonia V. Bennett
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  8. Arlene E. Chung
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  9. Mattias Jonsson
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  10. Ronald C. Chen
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  11. Bryce B. Reeve
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Contributions

All authors contributed to the study conception and design. Material preparation and data collection were performed by Cleo A. Samuel, Angela Smith, Bryce B. Reeve, Ronald Chen, and Zahra Mahbooba. Analysis was performed by Cleo A. Samuel, Wendi Elkins, and Jennifer Richmond. The first draft of the manuscript was written by Cleo A. Samuel, Wendi Elkins, and Jennifer Richmond. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Cleo A. Samuel.

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Conflicts of interest

Dr. Cleo A. Samuel reports research funding from NCI and Pfizer for work unrelated to this study. Dr. Angela Smith reports funding from Patient-Centered Outcomes Research Institute and Agency for Healthcare Research and Quality and compensation as a consultant for Merck and scientific advisory board for Urogen and Photocure during the study time period, all of which were outside the relevant work. All other authors do not report any conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (University of North Carolina Institutional Review Board IRB number: 16–2873) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Samuel, C.A., Smith, A.B., Elkins, W. et al. Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients. Qual Life Res 30, 3213–3227 (2021). https://doi.org/10.1007/s11136-020-02442-4

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