Ullrich Phoebe, Voß Henrike, Unsöld Laura, Thomas Michael, Villalobos Matthias
Department of Thoracic Oncology, Thoraxklinik Heidelberg, Heidelberg, University Hospital, Translational Lung Research Center Heidelberg (TLRC-H), German Center for Lung Research (DZL), Heidelberg, Germany; Center for Geriatric Medicine, Heidelberg University Hospital, Agaplesion Bethanien Hospital Heidelberg, Heidelberg, Germany.
Department of Thoracic Oncology, Thoraxklinik Heidelberg, Heidelberg, University Hospital, Translational Lung Research Center Heidelberg (TLRC-H), German Center for Lung Research (DZL), Heidelberg, Germany.
Patient Educ Couns. 2025 May;134:108706. doi: 10.1016/j.pec.2025.108706. Epub 2025 Feb 14.
To provide an overview of existing interactive web-based educational tools and decision aids for patients with advanced cancer and to evaluate their development process, content, feasibility, usability, and effectiveness.
Systematic literature search from inception to November 2023; screening with Covidence software; narrative analysis of results and quality assessment with the SUNDAE checklist.
Sixteen web-based tools were identified: Seven for breast cancer, six for other specific cancers, and three for mixed populations. Studies predominantly used literature reviews, focus groups, and/or pre-existing tools for the development. The tools were heterogeneous and not all integrated aspects of end-of-life care. User tests included controlled trials, prospective interventional cohort studies, and a retrospective observational study, involving a total of 6192 patients. Results showed partially low adoption and infrequent use. Feasibility and usability were positively rated with high rates of user satisfaction. Preparation for and involvement in decision-making was partially supported by increased knowledge and improved doctor-patient relationships. Effects on involvement and self-efficacy in decision-making, participation, and distress were uncertain. Effects on quality of life, hope, anxiety, engagement in palliative care/advance directives, and survival were not found.
Despite high user satisfaction and adequate feasibility and usability, the evidence for other outcomes is diverse and low for long-term implementation. Tools are very heterogeneous in cancer entities and content. Although targeting patients with advanced cancer not all tools integrate aspects of palliative care and end-of-life.
In advanced cancer care, patient involvement in decision-making is complex. Web-based solutions are promising because of easy accessibility and dissemination and the ability to adapt information to patients' needs and new treatment developments. Still, only a few evidence-based web-based educational tools and decision aids are available. Filling this gap is essential to empower patients to make informed and goal-concordant treatment decisions.
概述现有的针对晚期癌症患者的基于网络的交互式教育工具和决策辅助工具，并评估其开发过程、内容、可行性、可用性和有效性。
从开始到2023年11月月进行系统的文献检索；使用Covidence软件进行筛选；用SUNDAE清单对结果进行叙述性分析和质量评估。
共识别出16种基于网络的工具：7种用于乳腺癌，6种用于其他特定癌症，3种用于混合人群。研究主要使用文献综述、焦点小组和/或现有工具进行开发。这些工具具有异质性，并非都涵盖了临终关怀的各个方面。用户测试包括对照试验、前瞻性干预队列研究和一项回顾性观察研究，共涉及6192名患者。结果显示部分工具的采用率较低且使用频率不高。可行性和可用性得到了积极评价，用户满意度较高。知识的增加和医患关系的改善在一定程度上支持了患者为决策做准备和参与决策。对决策参与度、自我效能感、参与度和痛苦的影响尚不确定。未发现对生活质量、希望、焦虑、参与姑息治疗/预先指示以及生存的影响。
尽管用户满意度高，且具有足够的可行性和可用性，但其他结果的证据多样，长期实施的证据不足。这些工具在癌症类型和内容方面非常异质。虽然针对晚期癌症患者，但并非所有工具都整合了姑息治疗和临终关怀的各个方面。
在晚期癌症护理中，患者参与决策很复杂。基于网络的解决方案很有前景，因为其易于获取和传播，并且能够根据患者需求和新的治疗进展调整信息。然而，目前只有少数基于网络的循证教育工具和决策辅助工具。填补这一空白对于使患者能够做出明智且符合目标的治疗决策至关重要。
