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

Background Genetic testing is essential to identify research participants for clinical trials enrolling people with Parkinson’s 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. Objective As 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. Methods Genetic 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. Results Qualitative 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. Conclusions User 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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was funded by The University of Pennsylvania ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: IRB of The University of Pennsylvania gave ethical approval for this work I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes All data produced in the present study are available upon request to the authors