PEPSA

Abstract

Psoriatic arthritis is a chronic inflammation disease that affects the joints and the skin, which can manifest in many ways and various severities. Psoriatic arthritis impacts the lives of patients in both physical and mental ways. This project focussed on how the patient experience can be improved of newly diagnosed psoriatic arthritis patients. The patient experience involves multiple things, including the hospital visits and life at home. For this project it was decided to focus on the context of home. To get the necessary insights into the disease and the experience of patients with psoriatic arthritis, the co-creation method was used. In this method, a small group of stakeholders are actively part of the complete project as experts. In this project, five PsA patients were included as experts of their own experiences. The literature study and explorative research done in this project showed the following thing about the patient experience of PsA patients:

- Most of the information and help that is available focusses on the physical difficulties that psoriatic arthritis causes, even though there are a lot of mental difficulties that currently get too little attention.

- There is a lot of information available that the patients only get when they look for it themselves. But especially right after their diagnosis, they have little to no idea of what is relevant and what they have to look for.



With this knowledge, it was decided to focus on these mental difficulties that patients have. To do this, several group sessions together with the five participating patients were done. These sessions revealed that the diagnosis of psoriatic arthritis influences the perception of their identity as well as how they think others perceive them. The patients want to stay valuable and independent, where the psoriatic arthritis causes them to make changes in their daily life and become more dependable. This gives patients the idea that the psoriatic arthritis sometimes takes control over their life. This insight led to the design goal of the project, where the focus laid on empowering the patients to be in control of their own life again.



Together with the participant group, various design directions were explored and evaluated with help of various prototypes. This eventually resulted in the final design: The PEPSA journal.



The PEPSA journal is a service that provides the user with journal pages that focus on several aspects of life and psoriatic arthritis. The journal makes a distinction between standard material, which is relevant for everyone and focus topics, which allow the user to personalize their journal and make it more fitting to their life and what they think is relevant. Through positively formulated questions about each topic the users are encouraged to think about the various aspects of their life and psoriatic arthritis and how they relate to and influence each other. In this way the PEPSA journal allows the user to get more insights into their situation and get a clearer view of their life with psoriatic arthritis, putting them back in control.