Developing a Mobile Web App to Support Quality of Life Monitoring and Education for Adults with Urothelial Carcinoma Undergoing Systemic Treatment

What this Trial Is About

This observational study focuses on patients diagnosed with urothelial carcinoma, aiming to develop a web app to help them better understand their condition and treatments. The study seeks to identify which contents and tools patients find most useful for supporting decision-making and improving education about urothelial carcinoma. It is sponsored by IRCCS San Raffaele and targets patients either about to start or already receiving systemic treatments. Participants will complete questionnaires designed by researchers to collect demographic and clinical information, including age, sex, education, treatment type, physical activity, caregiver status, and comfort using mobile devices. They will review paper questionnaires presenting potential app content such as quality of life assessments, symptom and side effect education, links to patient forums and support groups, and educational videos and podcasts. Patients can also suggest additional useful tools, and their feedback will be gathered through co-creation sessions using the Design Thinking method. During the study, participants will be asked to rate the proposed app contents, and researchers will measure the evaluation scores at three months. The study will also assess participants eHealth literacy. The overall involvement includes answering questionnaires and participating in sessions to shape the future app. The findings aim to help design a patient-centered digital tool to support quality of life monitoring and education for urothelial carcinoma patients.

A Patient-Directed Mobile Tool to Streamline the QoL Assessment and Monitoring in Urothelial Carcinoma