This study proposes a structured framework for patient involvement in CAYA cancer survivor CPG development, advocating for continuous patient involvement to enhance guideline quality, adoption, and impact. Future efforts should align with our proposed approach to patient involvement in CPG development to establish standardized practices within existing frameworks. Young people who survive caner often face health problems later in life because of the cancer or its treatment. To help prevent or manage these problems, experts use clinical practice guidelines, which are documents that explain what follow up care survivors should receive. Although involving (former) patients in developing these guidelines is important, it does not always happen in a structured or meaningful way. In this study, we worked with 49 young cancer survivors from across Europe during a workshop held in Vienna in 2023. Through group discussions and interactive exercises, the participants shared their ideas about how (former) patients should be involved in creating follow up care guidelines. The survivors recommended several ways to improve their involvement. This included being clear about expectations, offering support and training, working together respectfully, and communicating openly. Their suggestions were organized into four steps of guideline development: recruiting patients, preparing them for the process, developing the guidelines together, and sharing the final guidelines widely. Our findings show that young cancer survivors should be treated as active partners throughout the process of developing guidelines for follow up care. Using a structured approach can improve the quality and usefulness of these guidelines. We suggest a structured approach to (former) patient involvement so that it becomes a standard part of guideline development in the future.
Wams et al. (Tue,) studied this question.