Warrington Lorraine, Absolom Kate, Conner Mark, Kellar Ian, Clayton Beverly, Ayres Michael, Velikova Galina
Section of Patient Centred Outcomes Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, United Kingdom.
School of Psychology, University of Leeds, Leeds, United Kingdom.
J Med Internet Res. 2019 Jan 24;21(1):e10875. doi: 10.2196/10875.
There has been a dramatic increase in the development of electronic systems to support cancer patients to report and manage side effects of treatment from home. Systems vary in the features they offer to patients, which may affect how patients engage with them and how they improve patient-centered outcomes.
This review aimed to (1) describe the features and functions of existing electronic symptom reporting systems (eg, symptom monitoring, tailored self-management advice), and (2) explore which features may be associated with patient engagement and patient-centered outcomes.
The review was registered with the International Prospective Register of Systematic Reviews (PROSPERO) and followed guidelines from the Centre for Reviews and Dissemination (University of York, United Kingdom). Primary searches were undertaken of MEDLINE, Embase, PsycInfo, Web of Science, Cochrane Central Register of Controlled Trials, and the Health Technology Assessment databases. Secondary searches were undertaken by screening reference lists and citations. Two researchers applied broad inclusion criteria to identify and select relevant records. Data were extracted and summarized using Microsoft Excel. In order to meet the aims, the study selection, data extraction, and data synthesis comprised two stages: (1) identifying and characterizing available systems and (2) summarizing data on patient engagement and patient-centered outcomes.
We identified 77 publications relating to 41 distinct systems. In Stage 1, all publications were included (N=77). The features identified that supported clinicians and care were facility for health professionals to remotely access and monitor patient-reported data (24/41, 58%) and function to send alerts to health professionals for severe symptoms (17/41, 41%). Features that supported patients were facility for patients to monitor/review their symptom reports over time (eg, graphs) (19/41, 46%), general patient information about cancer treatment and side effects (17/41, 41%), tailored automated patient advice on symptom management (12/41, 29%), feature for patients to communicate with the health care team (6/41, 15%), and a forum for patients to communicate with one another (4/41, 10%). In Stage 2, only publications that included some data on patient engagement or patient-centered outcomes were included (N=29). A lack of consistency between studies in how engagement was defined, measured, or reported, and a wide range of methods chosen to evaluate systems meant that it was not possible to compare across studies or make conclusions on relationships with system features.
Electronic systems have the potential to help patients manage side effects of cancer treatment, with some evidence to suggest a positive effect on patient-centered outcomes. However, comparison across studies is difficult due to the wide range of assessment tools used. There is a need to develop guidelines for assessing and reporting engagement with systems, and a set of core outcomes for evaluation. We hope that this review will contribute to the field by introducing a taxonomy for characterizing system features.
PROSPERO CRD42016035915; www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42016035915.
为支持癌症患者在家中报告和管理治疗副作用而开发的电子系统数量急剧增加。这些系统为患者提供的功能各不相同，这可能会影响患者对它们的使用方式以及它们如何改善以患者为中心的治疗效果。
本综述旨在（1）描述现有电子症状报告系统的功能和特性（如症状监测、个性化自我管理建议），以及（2）探讨哪些特性可能与患者参与度和以患者为中心的治疗效果相关。
本综述已在国际前瞻性系统评价注册库（PROSPERO）注册，并遵循了英国约克大学综述与传播中心的指南。对MEDLINE、Embase、PsycInfo、科学网、Cochrane对照试验中心注册库和卫生技术评估数据库进行了初步检索。通过筛选参考文献列表和引用文献进行二次检索。两名研究人员应用广泛的纳入标准来识别和选择相关记录。使用Microsoft Excel提取和汇总数据。为了实现研究目的，研究选择、数据提取和数据合成包括两个阶段：（1）识别和描述可用系统，以及（2）汇总关于患者参与度和以患者为中心的治疗效果的数据。
我们识别出77篇与41个不同系统相关的出版物。在第一阶段，纳入了所有出版物（N = 77）。识别出的支持临床医生和护理工作的特性包括：卫生专业人员能够远程访问和监测患者报告数据的功能（24/41，58%）以及针对严重症状向卫生专业人员发送警报的功能（17/41，41%）。支持患者的特性包括：患者能够随时间监测/查看其症状报告的功能（如图表）（19/41，即46%）、关于癌症治疗和副作用的一般患者信息（17/41，41%）、针对症状管理的个性化自动患者建议（12/41，29%）、患者与医疗团队沟通的功能（6/41，15%）以及患者相互交流的论坛（4/41，10%）。在第二阶段，仅纳入了包含一些关于患者参与度或以患者为中心的治疗效果数据的出版物（N = 29）。各研究在参与度的定义、测量或报告方式上缺乏一致性，并且用于评估系统的方法种类繁多，这意味着无法在不同研究之间进行比较，也无法就与系统特性的关系得出结论。
电子系统有潜力帮助患者管理癌症治疗的副作用，有证据表明其对以患者为中心的治疗效果有积极影响。然而，由于使用的评估工具种类繁多，不同研究之间难以进行比较。需要制定评估和报告与系统互动情况的指南，以及一套用于评估的核心结果指标。我们希望本综述通过引入一种用于描述系统特性的分类法，为该领域做出贡献。
PROSPERO CRD42016035915；www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42016035915 。
