Journal
ALZHEIMER'S & DEMENTIA: DIAGNOSIS, ASSESSMENT & DISEASE MONITORING
Volume 14, Issue 1, Pages -Publisher
WILEY
DOI: 10.1002/dad2.12333
Keywords
brain imaging; communication; dementia; diagnosis; diagnostic testing; neuropsychology; prevention; prognosis; progression
Categories
Funding
- Stichting Alzheimer Nederland
- Stichting Vrije Universiteit Medical Center Fonds
- Health-Holland, Top Sector Life Sciences, and Health [LSHM19123-HSGF, LSHM20106]
- Pasman Stichting
- ABOARD from ZonMW [73305095007]
- Alzheimer Nederland [WE.15-2019-05]
- Memorabel Dementia Fellowship 2021 (ZonMw project) [10510022110004]
- EU Joint Programme-Neurodegenerative Disease Research (JPND) project EURO-FINGERS (ZonMW-Memorabel) [733051102]
- Finland, Academy of Finland
- Germany, Federal Ministry of Education and Research
- Spain, National Institute of Health Carlos III
- Luxemburg, National Research Fund
- Hungary, National Research, Development, and Innovation Office
- The Netherlands, Netherlands Organisation for Health Research and Development
- Sweden, Swedish Research Council [INTER/JPND/19/BM/14012609]
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This study aimed to develop a personalized diagnostic report through a mixed-methods approach, involving surveys and focus group discussions with patients and care partners. The majority of participants valued the diagnostic report for summarizing test results in a brief and straightforward manner, including brain imaging and future expectations. Co-creation was identified as highly valuable in meeting the specific needs of end-users during the iterative design process.
IntroductionClear 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. MethodsWe 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. ResultsMost 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. DiscussionIn 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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