Gabel Pernille, Kirkegaard Pia, Larsen Mette Bach, Edwards Adrian, Andersen Berit
Department of Public Health Programmes, Randers Regional Hospital, Central Denmark Region, Randers NØ, Denmark.
Department of Clinical Medicine, Faculty of Health, Aarhus University, Aarhus, Denmark.
JMIR Form Res. 2018 May 22;2(1):e9. doi: 10.2196/formative.9696.
Citizens with lower educational attainments (EA) take up colorectal cancer screening to a lesser degree, and more seldom read and understand conventional screening information than citizens with average EAs. The information needs of citizens with lower EA are diverse, however, with preferences ranging from wanting clear recommendations to seeking detailed information about screening. Decision aids have been developed to support citizens with lower EA in making informed decisions about colorectal cancer screening participation, but none embrace diverse information needs.
The aim of this study was to develop a self-administered decision aid for participation in fecal immunochemical test-based colorectal cancer screening. The decision aid should be tailored to citizens with lower EA and should embrace diverse information needs.
The Web-based decision aid was developed according to an international development framework, with specific steps for designing, alpha testing, peer reviewing, and beta testing the decision aid. In the design phase, a prototype of the decision aid was developed based on previous studies about the information needs of lower EA citizens and the International Patient Decision Aid Standards guidelines. Alpha testing was conducted using focus group interviews and email correspondence. Peer review was conducted using email correspondence. Both tests included both lower EA citizens and health care professionals. The beta testing was conducted using telephone interviews with citizens with lower EA. Data were analyzed using thematic analysis.
The developed decision aid presented information in steps, allowing citizens to read as much or as little as wanted. Values clarification questions were included after each section of information, and answers were summarized in a "choice-indicator" on the last page, guiding the citizens toward a decision about screening participation. Statistics were presented in both natural frequencies, absolute risk formats and graphically. The citizens easily and intuitively navigated around the final version of the decision aid and stated that they felt encouraged to think about the benefits and harms of colorectal cancer screening without being overloaded with information. They found the decision aid easy to understand and the text of suitable length. The health care professionals agreed with the citizens on most parts; however, concerns were raised about the length and readability of the text.
We have developed a self-administered decision aid presenting information in steps. We involved both citizens and health care professionals to target the decision aid for citizens with lower EA. This decision aid represents a new way of communicating detailed information and may be able to enhance informed choices about colorectal cancer screening participation among citizens with lower EA.
受教育程度较低的公民进行结直肠癌筛查的比例较低，与平均受教育程度的公民相比，他们更少阅读和理解传统的筛查信息。然而，受教育程度较低的公民的信息需求是多样的，其偏好范围从希望得到明确的建议到寻求有关筛查的详细信息。已开发出决策辅助工具来支持受教育程度较低的公民就是否参与结直肠癌筛查做出明智的决策，但没有一个能满足多样化的信息需求。
本研究的目的是开发一种用于参与基于粪便免疫化学检测的结直肠癌筛查的自我管理决策辅助工具。该决策辅助工具应针对受教育程度较低的公民进行量身定制，并应满足多样化的信息需求。
基于网络的决策辅助工具是根据国际开发框架开发的，包括设计、阿尔法测试、同行评审和贝塔测试决策辅助工具的具体步骤。在设计阶段，基于先前关于受教育程度较低公民的信息需求的研究以及《国际患者决策辅助标准》指南，开发了决策辅助工具的原型。通过焦点小组访谈和电子邮件通信进行阿尔法测试。通过电子邮件通信进行同行评审。这两项测试都包括受教育程度较低的公民和医疗保健专业人员。通过与受教育程度较低的公民进行电话访谈进行贝塔测试。使用主题分析对数据进行分析。
开发的决策辅助工具按步骤呈现信息，公民可以根据自己的意愿阅读多少信息。在每部分信息之后都包含价值观澄清问题，答案在最后一页的“选择指标”中进行总结，引导公民就筛查参与做出决策。统计数据以自然频率、绝对风险格式和图表形式呈现。公民能够轻松、直观地浏览决策辅助工具的最终版本，并表示他们感到受到鼓励去思考结直肠癌筛查的益处和危害，而不会被过多信息压得喘不过气来。他们发现决策辅助工具易于理解，文本长度合适。医疗保健专业人员在大多数方面与公民的看法一致；然而，他们对文本的长度和可读性提出了担忧。
我们开发了一种按步骤呈现信息的自我管理决策辅助工具。我们让公民和医疗保健专业人员都参与进来，以使决策辅助工具针对受教育程度较低的公民。这种决策辅助工具代表了一种传达详细信息的新方式，可能能够增强受教育程度较低的公民对结直肠癌筛查参与的明智选择。
