User and Usability Testing of a web-based GBA and LRRK2 genetics education tool

BackgroundGenetic testing is essential to identify research participants for clinical trials enrolling people with Parkinsons disease (PD) carrying a variant in the GBA or LRRK2 genes. Limited availability of professionals trained in genetic counseling is a major barrier to increased testing. ObjectiveAs an alternative to pre-test genetic counseling, we developed a web-based genetics education tool focused on GBA and LRRK2 testing for PD called the Interactive Multimedia Approach to Genetic counseling to INform and Educate in PD (IMAGINE-PD) and conducted user testing and usability testing. MethodsGenetic counselors and PD and neurogenetics subject matter experts developed content for IMAGINE-PD, specifically focused on GBA and LRRK2 genetic testing. User testing to review content was conducted with thirteen patients with PD and eleven movement disorder specialists (MDS). Twelve PD patients were enrolled in usability testing of a high-fidelity prototype in accordance with national guidelines. Qualitative data analysis was used in both phases. ResultsQualitative analysis conducted by three evaluators identified themes emerging from MDS and PD patient feedback in user testing in three content areas: content, function, and appearance. Similarly, qualitative analysis of usability testing feedback identified additional themes in these three content areas. Refinements were made to IMAGINE-PD based on consensus recommendation by evaluators. ConclusionsUser testing for content review and usability testing have informed refinements to IMAGINE-PD to develop this alternative to standard pre-test genetic counseling. Comparison of this stakeholder-informed intervention to standard telegenetic counseling approaches is ongoing.