Development and design of a diagnostic report to support communication in dementia diagnosis: Presenter(s): Aniek van Gils, Alzheimer Center Amsterdam, Amsterdam UMC, location VUmc, Netherlands

The diagnostic work-up of dementia is complex and clear communication of test results is challenging yet important to empower patients and their care partners. A personalized diagnostic report, including visuals, could support the communication of test results and aid patients’ understanding. In this study, we aimed to design such a diagnostic report in co-creation with patients and care partners. We used a mixed-Methods: approach, combining surveys with focus groups in iteration. Phase 1 consisted of an international survey assessing needs among patients (n=50) and care partners (n=46), and phase 2 consisted of focus group meetings (n=3) to co-create the content and hands-on co-design the layout of the diagnostic report with patients (n=7) and care partners (n=7). Phase 3 validated results from phase 2 in a survey among patients (n=28) and care partners (n=12), and phase 4 comprised final feedback by dementia (care) experts (n=5). Descriptive statistics were used to report qualitative results, and directed content analysis was used to analyze qualitative data. Most patients (39/50, 78%) and care partners (38/46, 83%) positively valued a diagnostic report to summarize test results. They indicated the diagnostic report should be brief, straightforward, and comprise results of the diagnostic tests, including brain imaging and information on the future. Despite a clear preference for visual display of test results, several visualization options were deemed best and were equally comprehended. Through an iterative co-creation design process, we developed a prototype of a personalized diagnostic report for patients. We learned that co-creation is highly valuable to meet the specific needs of end-users and that one size does not fit all. Overall, the resulting prototype of the diagnostic report is an important first step towards improving the understanding of patients and care partners of the information essential for them to cope with their situation.