Taking shared decision making for prostate cancer to the next level: Requirements for a Dutch treatment decision aid with personalized risks on side effects

• Published in: Internet interventions : the application of information technology in mental and behavioural health 2023-03, Vol.31, p.100606, Article 100606
• Main Authors: Hochstenbach, Laura M.J., Determann, Domino, Fijten, Rianne R.R., Bloemen-van Gurp, Esther J., Verwey, Renée
• Format: Article
• Language: English
• Subjects: Full length; Patient decision aid; Personalized medicine; Prostate cancer; Shared decision making; User centered design
• ISSN: 2214-7829; 2214-7829
• DOI: 10.1016/j.invent.2023.100606

Different curative treatment modalities need to be considered in case of localized prostate cancer, all comparable in terms of survival and recurrence though different in side effects. To better inform patients and support shared decision making, the development of a web-based patient decision aid including personalized risk information was proposed. This paper reports on requirements in terms of content of information, visualization of risk profiles, and use in practice. Based on a Dutch 10-step guide about the setup of a decision aid next to a practice guideline, an iterative and co-creative design process was followed. In collaboration with various groups of experts (health professionals, usability and linguistic experts, patients and the general public), research and development activities were continuously alternated. Content requirements focused on presenting information only about conventional treatments and main side effects; based on risk group; and including clear explanations about personalized risks. Visual requirements involved presenting general and personalized risks separately; through bar charts or icon arrays; and along with numbers or words, and legends. Organizational requirements included integration into local clinical pathways; agreement about information input and output; and focus on patients' numeracy and graph literacy skills. The iterative and co-creative development process was challenging, though extremely valuable. The translation of requirements resulted in a decision aid about four conventional treatment options, including general or personalized risks for erection, urinary and intestinal problems that are communicated with icon arrays and numbers. Future implementation and validation studies need to inform about use and value in practice. •Using CPMs to personalize outcomes are a next step in optimizing PDAs for localized prostate cancer.•We developed a PDA including information about four conventional treatments and three main categories of side effects.•Icon arrays, numbers and verbal explanation were used to communicate general and personalized risks of side effects.•Co-creation with various experts intended to ensure optimal alignment with potential users and the situation in practice.