20 Design and development of a novel digital shared decision making aid for glioblastoma patients

Abstract Introduction Facilitating shared decision-making (SDM) and incorporating patient decision aids are recommended by the National Institute for Health and Care Excellence (NICE). However, there is a lack of SDM aids for the specific treatment of high-grade glioma patients. The objective of this study was to describe the design and development process of a digital SDM aid for glioblastoma patients. Methods Following the International Patient Decision Aid Standards (IPDAS), the aid was developed through an iterative process with multi-disciplinary researchers, patient advocates, and a private tech company. The content of the SDM aid was developed by incorporating a prior study’s results, which highlighted several important health outcomes from brain tumor patients’ perspectives. Results The following components were considered when creating the SDM aid: patient feedback on important health outcomes (such as quality of life, maintaining cognitive function, survival rates, and post-operative care), delivery of information on glioblastoma and different treatment options, user engagement, accessibility, and inclusive communication. Conclusion A digital SDM aid was developed to support an SDM intervention for patients with glioblastoma. In a future study, we will test the effectiveness and determine the impact of the developed aid on facilitating the SDM process and health outcomes for patients with glioblastoma.