3.9 Article

Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners

Publisher

WILEY
DOI: 10.1002/dad2.12333

Keywords

brain imaging; communication; dementia; diagnosis; diagnostic testing; neuropsychology; prevention; prognosis; progression

Funding

  1. Stichting Alzheimer Nederland
  2. Stichting Vrije Universiteit Medical Center Fonds
  3. Health-Holland, Top Sector Life Sciences, and Health [LSHM19123-HSGF, LSHM20106]
  4. Pasman Stichting
  5. ABOARD from ZonMW [73305095007]
  6. Alzheimer Nederland [WE.15-2019-05]
  7. Memorabel Dementia Fellowship 2021 (ZonMw project) [10510022110004]
  8. EU Joint Programme-Neurodegenerative Disease Research (JPND) project EURO-FINGERS (ZonMW-Memorabel) [733051102]
  9. Finland, Academy of Finland
  10. Germany, Federal Ministry of Education and Research
  11. Spain, National Institute of Health Carlos III
  12. Luxemburg, National Research Fund
  13. Hungary, National Research, Development, and Innovation Office
  14. The Netherlands, Netherlands Organisation for Health Research and Development
  15. Sweden, Swedish Research Council [INTER/JPND/19/BM/14012609]

Ask authors/readers for more resources

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.

Authors

I am an author on this paper
Click your name to claim this paper and add it to your profile.

Reviews

Primary Rating

3.9
Not enough ratings

Secondary Ratings

Novelty
-
Significance
-
Scientific rigor
-
Rate this paper

Recommended

No Data Available
No Data Available