Fritzell Kaisa, Wangmar Johanna, Hedberg Berith, Woudstra Anke, Forsberg Anna, Kottorp Anders, Franklin Karl A, Jervaeus Anna
Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Alfred Nobels Allé 23, 141 52, Huddinge, Sweden.
Theme Cancer, Hereditary Cancer Clinic, Karolinska University Hospital, Stockholm, Sweden.
J Cancer Educ. 2025 Apr 26. doi: 10.1007/s13187-025-02633-y.
A digital decision aid for cancer screening can gather balanced information in one place and give individuals the opportunity to elucidate their knowledge, values and engage in shared decision-making. Research shows that ethnic minorities and individuals with various functional limitations participate in cancer screening to a lower extent, hence our ambition to make the decision aid as available and applicable as possible, regardless of end-users' traits. The aim was to describe the design and alpha phases of the development of a digital decision aid for CRC screening and tentative end-users' perceptions. Based on a scientific framework for development of decision aids, participants were recruited through multiple channels. The decision aid was evaluated in two steps, a paper version (design phase) and a website prototype (alpha phase), using the think-aloud approach. Data were rich with detailed suggestions for improvements of the decision aid and how it was perceived. A positive outlook on the decision aid was common. Certain words, wordings or visual features were considered difficult and worry or anxiety, related to the content, were expressed. The variation in the findings illustrates the challenges of decision aid development. Still, our findings emphasise the importance of designing a decision aid in co-creation with its end-users. Developing a digital decision aid is complex, why a well-established framework is essential. With the goal of an equal healthcare system, the inclusion of individuals with diverse backgrounds and functional limitations should not only be a fundamental aspect of all research, but a prerequisite.
一种用于癌症筛查的数字决策辅助工具可以在一个地方收集全面的信息，并让个人有机会阐明自己的知识、价值观，参与共同决策。研究表明，少数族裔和有各种功能障碍的个体参与癌症筛查的程度较低，因此我们的目标是让决策辅助工具尽可能易于获取和应用，无论最终用户的特征如何。目的是描述用于结直肠癌筛查的数字决策辅助工具开发的设计和阿尔法阶段，以及潜在最终用户的看法。基于决策辅助工具开发的科学框架，通过多种渠道招募参与者。使用出声思考法分两步对决策辅助工具进行评估，第一步是纸质版（设计阶段），第二步是网站原型（阿尔法阶段）。数据丰富，包含了对决策辅助工具改进的详细建议以及对其的看法。对决策辅助工具持积极态度很常见。某些词汇、措辞或视觉特征被认为难以理解，并且有人表达了与内容相关的担忧或焦虑。研究结果的差异说明了决策辅助工具开发的挑战。尽管如此，我们的研究结果强调了与最终用户共同创建决策辅助工具的重要性。开发数字决策辅助工具很复杂，因此完善的框架至关重要。为了实现平等的医疗保健系统，纳入具有不同背景和功能障碍的个体不仅应该是所有研究的基本方面，而且是一个先决条件。
