Early communication is key - Designing a new communication tool to immediately empower people with psychogenic...

Patient empowerment and shared decision-making has been increasingly recognized as key factors for a favorable prognosis. This is particularly true in complex brain disorders such as psychogenic nonepileptic seizures (PNES) which go along with several challenges. People with PNES (PW-PNES) often feel lost in the healthcare system. Early clear communication is one of the few favorable prognostic variables. Our goal was to design a new ultrashort user-friendly communication tool allowing immediate patient empowerment.

We conceptualized a design thinking process with patient engagement of PW-PNES. Together with a larger group of PW-PNES, we developed a comprehensive user-friendly 1-page document summarizing the key features of PNES. We applied document engineering (DE) as a cognitive science-based new methodology. Document engineering is well established in the aviation, oil, and mining industries and measurably reduces comprehension and performance errors.

The design thinking process encompassed 5 phases (empathize, ideate, define, prototype, and test). A prototype of a 1-page document, the 1-Pager-PNES, was created which contained the essential 7 domains organized in a simple structure such as a promise-question-answer (PQA) format. Information was kept poignant, complete, easy-to-read integrating cognitive principles to optimize navigation. The prototype "1-Pager-PNES" was subsequently tested in a 7-member focus group. All patients expressed significant improvement in understanding their disease and felt immediately empowered. Implementing their specific feedbacks, reiterative testing, and involving PNES experts resulted in the final version of the "1-Pager-PNES".

A promising new communication tool reduced to 1-page only is introduced which improves patient guidance and enables better coping mechanisms with this complex disease. The patient/user is empowered quickly through finding answers to pressing questions. Our study is unique for three reasons: 1) it engaged patients in the developing process, 2) it produced a tool for immediate communication for PW-PNES, which follows principles of human behavior and cognitive science, and 3) it used cross-industry thinking. Despite all limitations, we consider our small pilot study an inspiration for future studies with focus on patient empowerment through user-friendly documents.