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Exploring the Digital Divide: Age and Race Disparities in Use of an Inpatient Portal.探索数字鸿沟:住院患者门户使用中的年龄和种族差异。
Telemed J E Health. 2020 May;26(5):603-613. doi: 10.1089/tmj.2019.0065. Epub 2019 Jul 9.
2
Patient free text reporting of symptomatic adverse events in cancer clinical research using the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).使用美国国家癌症研究所的患者报告结局版常见不良事件术语标准(PRO-CTCAE),对癌症临床研究中的症状性不良事件进行患者自由文本报告。
J Am Med Inform Assoc. 2019 Apr 1;26(4):276-285. doi: 10.1093/jamia/ocy169.
3
Two-Year Survival Comparing Web-Based Symptom Monitoring vs Routine Surveillance Following Treatment for Lung Cancer.基于网络的症状监测与常规监测在肺癌治疗后两年生存比较。
JAMA. 2019 Jan 22;321(3):306-307. doi: 10.1001/jama.2018.18085.
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The Digital Divide in Health-Related Technology Use: The Significance of Race/Ethnicity.健康相关技术使用中的数字鸿沟:种族/民族的重要性。
Gerontologist. 2019 Jan 9;59(1):6-14. doi: 10.1093/geront/gny138.
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Improving Cancer Care Through the Patient Experience: How to Use Patient-Reported Outcomes in Clinical Practice.通过患者体验改善癌症护理:如何在临床实践中使用患者报告的结果。
Am Soc Clin Oncol Educ Book. 2017;37:695-704. doi: 10.1200/EDBK_175418.
6
Who Uses Mobile Phone Health Apps and Does Use Matter? A Secondary Data Analytics Approach.谁在使用手机健康应用程序,这重要吗?一种二次数据分析方法。
J Med Internet Res. 2017 Apr 19;19(4):e125. doi: 10.2196/jmir.5604.
7
Responsiveness to Change and Minimally Important Differences of the Patient-Reported Outcomes Measurement Information System Gastrointestinal Symptoms Scales.患者报告结局测量信息系统胃肠道症状量表对变化的反应性及最小重要差异
Dig Dis Sci. 2017 May;62(5):1186-1192. doi: 10.1007/s10620-017-4499-9. Epub 2017 Mar 1.
8
Racial Disparities in Emotional Distress Among Cancer Survivors: Insights from the Health Information National Trends Survey (HINTS).癌症幸存者情绪困扰中的种族差异:来自健康信息国家趋势调查(HINTS)的见解
J Cancer Educ. 2017 Sep;32(3):556-565. doi: 10.1007/s13187-016-0984-7.
9
Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial.常规癌症治疗期间通过患者报告结局进行症状监测:一项随机对照试验。
J Clin Oncol. 2016 Feb 20;34(6):557-65. doi: 10.1200/JCO.2015.63.0830. Epub 2015 Dec 7.
10
Integrating Patient-Reported Outcome Measures into Routine Cancer Care: Cancer Patients' and Clinicians' Perceptions of Acceptability and Value.将患者报告的结局指标纳入癌症常规护理:癌症患者和临床医生对可接受性和价值的看法。
EGEMS (Wash DC). 2015 Oct 29;3(1):1169. doi: 10.13063/2327-9214.1169. eCollection 2015.

在一个黑人和白人膀胱癌和前列腺癌患者队列中,电子症状监测的用户体验和感知价值存在种族差异。

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

机构信息

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.

出版信息

Qual Life Res. 2021 Nov;30(11):3213-3227. doi: 10.1007/s11136-020-02442-4. Epub 2020 Feb 28.

DOI:
10.1007/s11136-020-02442-4
PMID:32112276
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9307105/
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.

摘要

目的

电子患者报告结局(ePRO)在常规癌症护理期间越来越多地用于症状监测,但在不同的患者群体中很少得到评估。我们评估了黑人和白人癌症患者对 ePRO 的用户体验和感知价值。

方法

我们从一家机构招募了 30 名黑人膀胱癌和前列腺癌患者和 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或自动电话接口报告症状,并完成了侧重于用户体验和价值的满意度调查和定性访谈。我们使用叙述性混合方法评估了 ePRO 用户体验和感知价值的总体和种族特异性差异。

结果

大多数参与者选择了基于网络的系统,但与白人相比,黑人更有可能使用基于自动电话的系统。在满意度调查中,白人比黑人更常报告说理解和报告症状更容易。黑人更常报告说,ePRO 系统有助于促进与临床医生进行症状相关的讨论。在访谈中,黑人描述了 ePRO 如何帮助他们识别症状,而白人则发现它有助于更好地了解和跟踪症状的纵向变化。黑人还表示由于认为更容易理解症状项目,因此他们更喜欢纸质 ePRO 选项。

结论

电子患者报告结局被黑人和白人癌症患者认为具有不同的价值,黑人报告与临床医生沟通的价值更高。为了优化电子患者报告结局的公平使用,肿瘤学实践应提供多种电子患者报告结局选项(例如,基于网络、基于电话)以及纸质选项,并在实施过程中考虑患者的电子健康素养需求。

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