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一款用于改善治疗坦桑尼亚癌症患者的专家与当地卫生工作者之间症状控制及信息交流的移动应用程序:以人为本的设计方法。

A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach.

作者信息

Morse Robert S, Lambden Kaley, Quinn Erin, Ngoma Twalib, Mushi Beatrice, Ho Yun Xian, Ngoma Mamsau, Mahuna Habiba, Sagan Sarah B, Mmari Joshua, Miesfeldt Susan

机构信息

Da Vinci Usability, Lexington, MA, United States.

Dimagi, Inc, Cambridge, MA, United States.

出版信息

JMIR Cancer. 2021 Mar 23;7(1):e24062. doi: 10.2196/24062.

Abstract

BACKGROUND

Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania, and innovative community-based solutions are needed. Mobile health technology holds promise; however, existing resources are limited, and outpatient access to palliative care specialists is poor. A mobile platform that extends palliative care specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and other symptom management can address this care gap.

OBJECTIVE

The aim of this study is to design and develop mobile-Palliative Care Link (mPCL), a web and mobile app to support outpatient symptom assessment and care coordination and control, with a focus on pain.

METHODS

A human-centered iterative design framework was used to develop the mPCL prototype for use by Tanzanian palliative care specialists (physicians and nurses trained in palliative care), poor-prognosis cancer patients and their lay caregivers (patients and caregivers), and LHWs. Central to mPCL is the validated African Palliative Care Outcome Scale (POS), which was adapted for automated, twice-weekly collection of quality of life-focused patient and caregiver responses and timely review, reaction, and tracking by specialists and LHWs. Prototype usability testing sessions were conducted in person with 21 key informants representing target end users. Sessions consisted of direct observations and qualitative and quantitative feedback on app ease of use and recommendations for improvement. Results were applied to optimize the prototype for subsequent real-world testing. Early pilot testing was conducted by deploying the app among 10 patients and caregivers, randomized to mPCL use versus phone-contact POS collection, and then gathering specialist and study team feedback to further optimize the prototype for a broader randomized field study to examine the app's effectiveness in symptom control among cancer patients.

RESULTS

mPCL functionalities include the ability to create and update a synoptic clinical record, regular real-time symptom assessment, patient or caregiver and care team communication and care coordination, symptom-focused educational resources, and ready access to emergency phone contact with a care team member. Results from the usability and pilot testing demonstrated that all users were able to successfully navigate the app, and feedback suggests that mPCL has clinical utility. User-informed recommendations included further improvement in app navigation, simplification of patient and caregiver components and language, and delineation of user roles.

CONCLUSIONS

We designed, built, and tested a usable, functional mobile app prototype that supports outpatient palliative care for Tanzanian patients with cancer. mPCL is expressly designed to facilitate coordinated care via customized interfaces supporting core users-patients or caregivers, LHWs, and members of the palliative care team-and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support the symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas.

摘要

背景

改善癌症患者临终症状控制干预措施的可及性是坦桑尼亚的一项公共卫生重点工作,需要创新的社区解决方案。移动健康技术具有潜力;然而,现有资源有限,门诊患者获得姑息治疗专家的服务情况较差。一个通过与社区当地卫生工作者(LHW)共享护理来扩展姑息治疗专家服务并为疼痛和其他症状管理提供远程支持的移动平台可以填补这一护理缺口。

目的

本研究的目的是设计并开发移动姑息治疗链接(mPCL),这是一个网络和移动应用程序,用于支持门诊症状评估以及护理协调与控制,重点关注疼痛。

方法

采用以用户为中心的迭代设计框架来开发mPCL原型,供坦桑尼亚姑息治疗专家(接受过姑息治疗培训的医生和护士)、预后不良的癌症患者及其非专业护理人员(患者和护理人员)以及LHW使用。mPCL的核心是经过验证的非洲姑息治疗结果量表(POS),该量表经过调整,可自动每周两次收集以生活质量为重点的患者和护理人员的反馈,并由专家和LHW及时进行审查、反应和跟踪。对21名代表目标最终用户的关键信息提供者进行了原型可用性测试。测试包括直接观察以及关于应用程序易用性的定性和定量反馈,还有改进建议。测试结果被用于优化原型,以便进行后续的实际测试。早期试点测试是通过在10名患者和护理人员中部署该应用程序进行的,将他们随机分为使用mPCL组和通过电话联系收集POS组,然后收集专家和研究团队的反馈,以进一步优化原型,用于更广泛的随机现场研究,以检验该应用程序在控制癌症患者症状方面的有效性。

结果

mPCL的功能包括创建和更新概要临床记录、定期实时症状评估、患者或护理人员与护理团队的沟通及护理协调、以症状为重点的教育资源,以及可随时拨打紧急电话联系护理团队成员。可用性和试点测试结果表明,所有用户都能够成功使用该应用程序,反馈表明mPCL具有临床实用性。用户提出的改进建议包括进一步改善应用程序的导航、简化患者和护理人员部分及语言,以及明确用户角色。

结论

我们设计、构建并测试了一个可用且功能完备的移动应用程序原型,该原型支持为坦桑尼亚癌症患者提供门诊姑息治疗。mPCL经过专门设计,通过支持核心用户(患者或护理人员、LHW和姑息治疗团队成员)及其各自角色的定制界面来促进协调护理。未来需要开展工作来证明mPCL在远程支持坦桑尼亚癌症患者症状控制需求方面的有效性和可持续性,特别是在难以到达的地区。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0a2f/8088847/7f94d03157a8/cancer_v7i1e24062_fig1.jpg

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