The co-creation of a psychosocial support website for advanced cancer patients obtaining a long-term response to immunotherapy or targeted therapy

Due to new treatment options, the number of patients living longer with advanced cancer is rapidly growing. While this is promising, many long-term responders (LTRs) face difficulties adapting to life with cancer due to persistent uncertainty, feeling misunderstood, and insufficient tools to navigate their “new normal”. Using the Person-Based Approach, this study developed and evaluated a website in co-creation with LTRs, healthcare professionals, and service providers, offering evidence-based information and tools for LTRs. We identified the key issues (i.e., living with uncertainty, relationships with close others, mourning losses, and adapting to life with cancer) and established the website’s main goals: acknowledging and normalizing emotions, difficulties, and challenges LTRs face and providing tailored information and practical tools. The prototype was improved through repeated feedback from a user panel (n = 9). In the evaluation phase (n = 43), 68% of participants rated the website’s usability as good or excellent. Interview data indicated that participants experienced recognition through portrait videos and quotes, valued the psycho-education via written text and (animated) videos, and made use of the practical tools (e.g. conversation aid), confirming that the main goals were achieved. Approximately 90% of participants indicated they would recommend the website to other LTRs. The Dutch website https://doorlevenmetkanker.nl/ (i.e., continuing life with cancer, accessed on 21 March 2025) was officially launched in March 2025 in the Netherlands.