A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider...

An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations.

This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building.

User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed.

The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process.

The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.