Abstract
Purpose
Guidelines recommend that genetic reports should be clear to
nonspecialists, including patients. We investigated the feasibility of creating
reports for cystic fibrosis carrier testing through a rapid user-centered design
process that built on a previously developed generic template. We evaluated the
new reports’ communication efficacy and effects on comprehension against
comparable reports used in current clinical practice.
Methods
Thirty participants took part in three rounds of interviews.
Usability problems were identified and rectified in each round. One hundred
ninety-three participants took part in an evaluation of the resulting reports
measuring subjective comprehension, risk probability comprehension, perceived
communication efficacy, and other factors, as compared with standard
reports.
Results
Participants viewing the user-centered reports rated them as
clearer, easier to understand, and more effective at communicating key
information than standard reports. Both groups ended up with equivalent
knowledge of risk probabilities, although we observed differences in how those
probabilities were perceived.
Conclusion
Our findings demonstrate that by starting with a patient-friendly
generic report template and modifying it for specific scenarios with a rapid
user-centered design process, reports can be produced that are more effective at
communicating key information. The resulting reports are now being implemented
into clinical care.