Development and design of a diagnostic report to support communication in dementia: Co‐creation with patients and care partners
Aniek M. van Gils, Leonie N.C. Visser, Heleen M.A. Hendriksen, Jean Georges, Wiesje M. van der Flier, Hanneke Rhodius‐Meester
Abstract
Abstract Introduction Clear communication of diagnostic test results and dementia diagnosis is challenging yet important to empower patients and care partners. A personalized diagnostic report could support the communication of dementia diagnostics and aid patients’ understanding of diagnosis. In this study, we aimed to design a diagnostic report in co‐creation with patients and care partners. Methods 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 to 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 quantitative results and directed content analysis was used to analyze qualitative data. Results Most patients (39/50, 78%) and care partners (38/46, 83%) positively valued a diagnostic report to summarize test results. The report should be brief, straightforward, and comprise results of the diagnostic tests, including brain imaging and information on future expectations. Despite a clear preference for visual display of test results, several visualization options were deemed best and were equally comprehended. Discussion In this study, we developed a prototype of a personalized patient report through an iterative design process and learned that co‐creation is highly valuable to meet the specific needs of end‐users.