Parisot Iii Paul E, Wheeler Facerlyn, Bonnet Kemberlee, Rebeiro Peter F, Schember Cassandra O, McCainster Korlu, Cooper Robert L, Berthaud Vladimir, Schlundt David G, Pettit April C
Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States.
Department of Family and Community Medicine, Meharry Medical College, Nashville, TN, United States.
JMIR Form Res. 2023 Mar 22;7:e42888. doi: 10.2196/42888.
Black Americans, particularly in the southern United States, are disproportionately affected by the US HIV epidemic. Patient-reported outcome (PRO) data collection can improve patient outcomes and provide oft-overlooked data on mental health, substance use, and patient adherence to antiretroviral therapy.
We piloted the use of an electronic tablet to collect PRO data on social and behavioral determinants of health among people with HIV at the Meharry Community Wellness Center, an HIV clinic affiliated with a Historically Black Medical College in Nashville, Tennessee. Our primary objective was to better understand patients' experiences and comfort with using an electronic PRO tool through patient interviews.
We enrolled 100 people with HIV in care at the Meharry Community Wellness Center consecutively to completely validate PRO tools using the Research Electronic Data Capture platform on a hand-held tablet. Using a purposive sampling strategy, we enrolled 20 of the 100 participants in an in-depth interview (IDI). Interview guide development was grounded in the cognitive-behavioral model, in which thoughts, feelings, and behaviors are interrelated. IDIs were audio recorded, transcribed, deidentified, and formatted for coding. A hierarchical coding system was developed and refined using an inductive-deductive approach.
Among the 100 people with HIV enrolled, the median age was 50 (IQR 42-54) years; 89% (n=89) were Black, 60% (n=60) were male, and 82% (n=82) were living below 100% of the federal poverty level in 2016. Five major interview themes emerged: overall experience, question content, sensitive topics, clinic visit impact, and future recommendations. IDI participants felt that the tablet was easy to use and that the question content was meaningful. Question content related to trauma, sexual and drug use behaviors, mental health, stigma, and discrimination elicited uncomfortable or distressing feelings in some participants. Patients expressed a strong desire to be truthful, and most would complete these surveys without compensation at future visits if offered.
The use of an electronic tablet to complete PRO data collection was well received by this cohort of vulnerable persons in HIV care in the southern United States. Despite some discomfort related to question content, our cohort overwhelmingly believed this was a meaningful part of their medical experience and expressed a high desire for truthfulness. Future research will focus on scaling up the implementation and evaluation of PRO data collection in a contextually appropriate manner while obtaining input from providers and staff to ensure that the collected data are both applicable and actionable.
美国黑人，尤其是美国南部的黑人，在该国的艾滋病流行中受到的影响尤为严重。患者报告结局（PRO）数据收集可以改善患者的治疗效果，并提供有关心理健康、药物使用以及患者对抗逆转录病毒疗法依从性等常常被忽视的数据。
我们在位于田纳西州纳什维尔的一所历史悠久的黑人医学院附属的艾滋病诊所——梅哈里社区健康中心，试点使用电子平板电脑收集艾滋病患者健康的社会和行为决定因素的PRO数据。我们的主要目标是通过患者访谈更好地了解患者使用电子PRO工具的体验和舒适度。
我们连续招募了100名在梅哈里社区健康中心接受治疗的艾滋病患者，以使用手持平板电脑上的研究电子数据采集平台全面验证PRO工具。采用目的抽样策略，我们从100名参与者中招募了20名进行深入访谈（IDI）。访谈指南的制定基于认知行为模型，即思想、情感和行为是相互关联的。IDI进行了录音、转录、去识别化处理并格式化以便编码。使用归纳-演绎方法开发并完善了一个分层编码系统。
在招募的100名艾滋病患者中，年龄中位数为50岁（四分位间距42 - 54岁）；89%（n = 89）为黑人，60%（n = 60）为男性，82%（n = 82）在2016年生活在联邦贫困线100%以下。出现了五个主要访谈主题：总体体验、问题内容、敏感话题、门诊就诊影响和未来建议。IDI参与者认为平板电脑易于使用，问题内容有意义。与创伤、性和药物使用行为、心理健康、耻辱感和歧视相关的问题内容在一些参与者中引发了不适或痛苦的感受。患者表达了强烈的如实回答的愿望，并且如果未来就诊时被提供此类调查，大多数人会无偿完成。
在美国南部，这一艾滋病护理中的弱势群体队列对使用电子平板电脑完成PRO数据收集的方式反响良好。尽管与问题内容存在一些不适，但我们的队列绝大多数人认为这是他们医疗体验中有意义的一部分，并表达了对如实回答的高度意愿。未来的研究将专注于以上下文合适的方式扩大PRO数据收集的实施和评估规模，同时获取提供者和工作人员的意见，以确保所收集的数据既适用又可行。
