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

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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
Quality of Life Research ( IF 3.3 ) Pub Date : 2020-02-28 , DOI: 10.1007/s11136-020-02442-4
Cleo A Samuel ₁ , Angela B Smith ₂ , Wendi Elkins ₃ , Jennifer Richmond ₄ , Zahra Mahbooba ₅ , Ethan Basch ₆ , Antonia V Bennett ₇ , Arlene E Chung ₈ , Mattias Jonsson ₉ , Ronald C Chen ₁₀ , Bryce B Reeve ₁₁

Affiliation

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.
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.
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.
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.
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.
Lineberger Comprehensive Cancer Center, University of North Carolina At Chapel Hill, 170 Manning Drive, Campus Box 7305, Chapel Hill, NC, 27599-7305, USA.
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.
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.
Patient Reported Outcomes Core Facility, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
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.
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.

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.

中文翻译：

在一组黑白膀胱癌和前列腺癌患者中，用户体验的种族差异和电子症状监测的感知价值

目的

电子患者报告结果 (ePRO) 越来越多地用于常规癌症护理期间的症状监测，但很少在不同的患者群体中进行评估。我们评估了黑人和白人癌症患者的 ePRO 用户体验和感知价值。

方法

我们从一个机构招募了 30 名黑人和 49 名白人膀胱癌和前列腺癌患者。参与者在 3 个月内使用基于网络的或自动电话界面报告了症状，并完成了关注用户体验和价值的满意度调查和定性访谈。使用叙述性混合方法，我们评估了 ePRO 用户体验和感知价值的整体差异和种族差异。

结果

大多数参与者选择了基于网络的系统，但黑人比白人更有可能使用基于电话的自动系统。在满意度调查中，与黑人相比，白人更容易理解和报告症状。黑人更经常报告说，ePRO 系统有助于促进与临床医生进行症状相关的讨论。在采访中，黑人描述了 ePRO 如何帮助他们识别症状，而白人发现更好地理解和纵向跟踪症状的价值。黑人还表达了对纸质 ePRO 选项的偏好，因为他们认为更容易更好地理解症状项目。