Table 1.
Group | Aim | Themes | Changes made based on the results | |
Focus group | ||||
Clinicians | To explore the need for risk calculation and communication and preferences with regard to visualization | Module 1: Risk calculation. Reporting percentages is considered pleasant.; Reliability and validity; CIs should be added and it should be possible for clinicians to look up how the risk models were constructed and how they perform; The module should be user-friendly such that every professional is able to use it.; Module 2: A graphical representation of risk alone could be difficult for patients to understand and therefore would not be sufficient; Clinicians often show brain images to support the communication of test results; Clinicians provide patients with written information. | We included a link to the original paper that describes how the risk models were constructed; We accompanied the graphical presentation of risk with a textual explanation; The module allows summary sheet for patients to be printed | |
Patients and caregivers | To explore communication needs and to explore what kind of information should be communicated when disclosing (risk related) test results and how it should be visualized | Module 2: Risk Communication. Patients would like to know their exact progression risk. The explanation of risk should be simple. To compare their results with what is normal for their age. How should I discuss the results with family or friends?; Visualization: Patients like to see their brain images (MRIa or CTb) at home. Patients like to know which results have led to the presented risk and why. The preference for visualization of risk differs per person. How should I deal with the diagnosis? Are there things that I can do myself (lifestyle changes, tips and tricks)? Which steps do we need to take (case manager etc)? | We included an a priori risk as reference group for comparison purposes. The result page includes information on each diagnostic test and whether this result was abnormal. A summary is given at the end with the opportunity to include personal notes. We included 2 ways to visualize risk: a bar chart and an icon array. Users can switch between these 2 | |
Panel | ||||
Clinicians | To explore the preferences with regard to visualization of test results for patients | Clinicians like to communicate as dichotomous’ as possible. However, biomarker results always have a gray area. This could be visualized by a traffic light; Clinicians would like to visualize risk in a line chart with time on the horizontal axes; The brain images (MRI or CT) could be visualized with a figure of the brain: normal versus atrophy; Clinicians emphasize that the module should be an aid, and that there should remain room for personal variation | We added a traffic light visualization for all diagnostic tests; An open text field provides the ability to personalize the result page based on the needs of clinicians and patients | |
Individual | ||||
Interviews | To explore whether the storyline, visualization, and style of the printout page are clear | The printout contains too much and too complex information; The presentation of the a priori risk is confusing and sometimes daunting; Patients prefer to see their test results first followed by the risk; The graphical presentation of risk in 2 ways works well; The font is too small; The print of the results page is considered as valuable. | A total of 2 communication experts reviewed the text on understandable language; We removed the a priori risk from this module; We changed the flow of the printout: test results are presented first followed by risk; Colors and font were optimized |
aMRI: magnetic resonance imaging.
bCT: computer tomography.