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部署癌症智能健康系统的行为与环境传感及干预以支持患者和家庭护理人员管理疼痛:可行性与可接受性研究

Deploying the Behavioral and Environmental Sensing and Intervention for Cancer Smart Health System to Support Patients and Family Caregivers in Managing Pain: Feasibility and Acceptability Study.

作者信息

LeBaron Virginia, Alam Ridwan, Bennett Rachel, Blackhall Leslie, Gordon Kate, Hayes James, Homdee Nutta, Jones Randy, Lichti Kathleen, Martinez Yudel, Mohammadi Sahar, Ogunjirin Emmanuel, Patel Nyota, Lach John

机构信息

University of Virginia School of Nursing, Charlottesville, VA, United States.

Massachusetts Institute of Technology, Cambridge, MA, United States.

出版信息

JMIR Cancer. 2022 Aug 9;8(3):e36879. doi: 10.2196/36879.

Abstract

BACKGROUND

Distressing cancer pain remains a serious symptom management issue for patients and family caregivers, particularly within home settings. Technology can support home-based cancer symptom management but must consider the experience of patients and family caregivers, as well as the broader environmental context.

OBJECTIVE

This study aimed to test the feasibility and acceptability of a smart health sensing system-Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C)-that was designed to support the monitoring and management of cancer pain in the home setting.

METHODS

Dyads of patients with cancer and their primary family caregivers were recruited from an outpatient palliative care clinic at an academic medical center. BESI-C was deployed in each dyad home for approximately 2 weeks. Data were collected via environmental sensors to assess the home context (eg, light and temperature); Bluetooth beacons to help localize dyad positions; and smart watches worn by both patients and caregivers, equipped with heart rate monitors, accelerometers, and a custom app to deliver ecological momentary assessments (EMAs). EMAs enabled dyads to record and characterize pain events from both their own and their partners' perspectives. Sensor data streams were integrated to describe and explore the context of cancer pain events. Feasibility was assessed both technically and procedurally. Acceptability was assessed using postdeployment surveys and structured interviews with participants.

RESULTS

Overall, 5 deployments (n=10 participants; 5 patient and family caregiver dyads) were completed, and 283 unique pain events were recorded. Using our "BESI-C Performance Scoring Instrument," the overall technical feasibility score for deployments was 86.4 out of 100. Procedural feasibility challenges included the rurality of dyads, smart watch battery life and EMA reliability, and the length of time required for deployment installation. Postdeployment acceptability Likert surveys (1=strongly disagree; 5=strongly agree) found that dyads disagreed that BESI-C was a burden (1.7 out of 5) or compromised their privacy (1.9 out of 5) and agreed that the system collected helpful information to better manage cancer pain (4.6 out of 5). Participants also expressed an interest in seeing their own individual data (4.4 out of 5) and strongly agreed that it is important that data collected by BESI-C are shared with their respective partners (4.8 out of 5) and health care providers (4.8 out of 5). Qualitative feedback from participants suggested that BESI-C positively improved patient-caregiver communication regarding pain management. Importantly, we demonstrated proof of concept that seriously ill patients with cancer and their caregivers will mark pain events in real time using a smart watch.

CONCLUSIONS

It is feasible to deploy BESI-C, and dyads find the system acceptable. By leveraging human-centered design and the integration of heterogenous environmental, physiological, and behavioral data, the BESI-C system offers an innovative approach to monitor cancer pain, mitigate the escalation of pain and distress, and improve symptom management self-efficacy.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/16178.

摘要

背景

令人痛苦的癌症疼痛仍然是患者及其家庭护理人员面临的严重症状管理问题,尤其是在家庭环境中。技术可以支持家庭癌症症状管理,但必须考虑患者和家庭护理人员的体验以及更广泛的环境背景。

目的

本研究旨在测试一种智能健康传感系统——癌症行为与环境传感及干预(BESI-C)——在家庭环境中支持癌症疼痛监测和管理的可行性和可接受性。

方法

从一家学术医疗中心的门诊姑息治疗诊所招募癌症患者及其主要家庭护理人员组成的二元组。BESI-C在每个二元组家庭中部署约2周。通过环境传感器收集数据以评估家庭环境(如光线和温度);蓝牙信标用于帮助定位二元组位置;患者和护理人员都佩戴智能手表,配备心率监测器、加速度计和一个定制应用程序以进行生态瞬时评估(EMA)。EMA使二元组能够从他们自己和伴侣的角度记录和描述疼痛事件。整合传感器数据流以描述和探索癌症疼痛事件的背景。从技术和程序两方面评估可行性。使用部署后调查和对参与者的结构化访谈评估可接受性。

结果

总体而言,完成了5次部署(n = 10名参与者;5个患者和家庭护理人员二元组),记录了283个独特的疼痛事件。使用我们的“BESI-C性能评分工具”,部署的总体技术可行性得分为86.4(满分100分)。程序可行性挑战包括二元组居住在农村地区、智能手表电池寿命和EMA可靠性,以及部署安装所需的时间长度。部署后可接受性李克特量表调查(1 = 强烈不同意;5 = 强烈同意)发现,二元组不同意BESI-C是一种负担(5分制下得1.7分)或侵犯了他们的隐私(5分制下得1.9分),并同意该系统收集了有助于更好管理癌症疼痛的信息(5分制下得4.6分)。参与者还表示有兴趣查看自己的个人数据(5分制下得4.4分),并强烈同意BESI-C收集的数据与各自的伴侣(5分制下得4.8分)和医疗保健提供者(5分制下得4.8分)共享很重要。参与者的定性反馈表明,BESI-C在疼痛管理方面积极改善了患者与护理人员的沟通。重要的是,我们证明了概念验证,即患有严重癌症的患者及其护理人员将使用智能手表实时标记疼痛事件。

结论

部署BESI-C是可行的,二元组认为该系统是可接受的。通过利用以人为本的设计以及异构环境、生理和行为数据的整合,BESI-C系统提供了一种创新方法来监测癌症疼痛、减轻疼痛和痛苦的加剧,并提高症状管理自我效能。

国际注册报告识别码(IRRID):RR2-10.2196/16178。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b3e5/9399893/20d51e08b23f/cancer_v8i3e36879_fig1.jpg

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