Schilling Lia, Kaden Jana, Bán Isabel, Berger-Höger Birte
Institute for Public Health and Nursing Research, University of Bremen, Bremen, Germany.
BMC Med Inform Decis Mak. 2025 Mar 10;25(1):125. doi: 10.1186/s12911-025-02960-6.
Many patients with cancer want to be involved in healthcare decisions. For adequate participation, awareness of one's own desires and preferences and sufficient knowledge about medical measures are indispensable. In order to support patient participation, a decision guide for patients with cancer was developed as part of a larger project called TARGET, which specifically aims to improve the care of patients with rare cancer.
The development of the decision guide took place from 08.2022 to 03.2023. The decision guide is a single component of a complex intervention that aims to facilitate decision support in cancer care for patients. For the development, existing development and evaluation studies of Question Prompt Lists (QPLs) were identified through systematic literature searches in the MEDLINE via PubMed, PsycInfo, and CINAHL databases. The decision guide was pre-tested for feasibility, usability, completeness and acceptance with the target groups through guided individual interviews. Sociodemographic data were collected anonymously. An expert review was conducted. The verbatim transcribed interviews were analysed using content analysis according to Kuckartz with MAXQDA. The guide has been iteratively optimized based on the results.
A generic decision guide for patients with cancer for diagnostic or treatment decisions was developed in both PDF web-based formats, based on the Ottawa Personal Decision Guide. It was supplemented with decision-related questions from QPLs for patients with cancer. The pre-test comprised seven expert reviews of (psych)oncologists and experts in evidence-based health information and ten interviews with cancer patients (n = 7), family relatives (n = 2), and one caregiver. The results were coded into nine main categories. The results indicated a good feasibility, usability and acceptability of the guide. The tool was perceived as comprehensive and appropriate. Individual elements were identified as modifiable for better comprehensibility. The target audience appreciated the decision guide as a good support option.
The decision guide is potentially a useful support option for patients with cancer facing medical decisions in their further course of treatment. In the TARGET project, it will be made available to patients and can be supplemented with decision coaching. Further steps for implementation into healthcare structures are necessary.
Not applicable.
许多癌症患者希望参与医疗决策。为了充分参与，了解自身的愿望和偏好以及对医疗措施有足够的了解是必不可少的。为了支持患者参与，作为一个名为TARGET的更大项目的一部分，开发了一份针对癌症患者的决策指南，该项目专门旨在改善罕见癌症患者的护理。
决策指南的开发时间为2022年8月至2023年3月。该决策指南是一项复杂干预措施的单一组成部分，旨在为癌症患者的医疗护理提供决策支持。为了进行开发，通过在MEDLINE via PubMed、PsycInfo和CINAHL数据库中进行系统的文献检索，确定了问题提示清单（QPLs）的现有开发和评估研究。通过有指导的个人访谈，对决策指南在目标群体中的可行性、可用性、完整性和可接受性进行了预测试。社会人口统计学数据是匿名收集的。进行了专家评审。根据Kuckartz的方法，使用MAXQDA对逐字转录的访谈进行内容分析。根据结果对指南进行了迭代优化。
基于渥太华个人决策指南，以PDF网络格式开发了一份针对癌症患者进行诊断或治疗决策的通用决策指南。它补充了来自癌症患者QPLs的决策相关问题。预测试包括对（心理）肿瘤学家和循证健康信息专家的七次专家评审，以及对七名癌症患者、两名家属和一名护理人员的十次访谈。结果被编码为九个主要类别。结果表明该指南具有良好的可行性、可用性和可接受性。该工具被认为是全面且合适的。个别元素被确定为可修改以提高可理解性。目标受众赞赏该决策指南是一个很好的支持选项。
该决策指南对于在后续治疗过程中面临医疗决策的癌症患者可能是一个有用的支持选项。在TARGET项目中，它将提供给患者，并可辅以决策指导。有必要采取进一步措施将其纳入医疗保健结构。
不适用。
