Establishing immunotherapy with immune checkpoint inhibitors has significantly improved survival rates for patients with metastatic melanoma. However, the treatments can have severe side effects, and it is often difficult for patients to decide whether and at what intensity to pursue such therapy. Digital patient decision aids can inform and educate in such a situation.
The PEF-Immune project (Partizipative Entscheidungsfindung zur Immuntherapie bei metastasiertem Melanom, Participatory Decision Making for Immunotherapy in Metastatic Melanoma) has developed such a tool for patients with metastatic melanoma: The advantages and disadvantages of the various therapy options are presented understandably on a web-based, interactive information portal. They are presented through explanatory videos, expert interviews, texts, graphics, and comprehensible risk charts. Further, video-based testimonials from patients support emotional processing and provide encouragement. In an interactive part, users can include their values, form their preferences, and are encouraged to ask questions. The information portal meets the criteria of the International Patient Decision Aids Standards Collaboration, which aims for the integration of care guidelines and continuous improvement via feedback loops.
PEF-Immune was funded by the Federal Joint Committee Innovation Fund (Innovationsfonds des Gemeinsamen Bundesausschuss) and scientifically evaluated. Among other things, the evaluation showed that patients using the web-based decision aid answered knowledge questions about treatment options correctly more often and assessed their risk of side effects more realistically than patients who did not use the service. However, the study also showed that only having better information is not enough; physicians also need to conduct appropriate discussions. Supplementary training for physicians on how to guide discussions seems essential to further promote participatory decision-making.
The PEF-Immune project has been nominated for the MSD Health Award 2023 and is up for election for the Audience Award. Click here to vote.