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 ( = 50) and care partners ( = 46), and phase 2 consisted of focus group meetings ( = 3) to co-create the content and to hands-on co-design the layout of the diagnostic report with patients ( = 7) and care partners ( = 7). Phase 3 validated results from phase 2 in a survey among patients ( = 28) and care partners ( = 12), and phase 4 comprised final feedback by dementia (care) experts ( = 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.
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| http://dx.doi.org/10.1002/dad2.12333 | DOI Listing |
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