Accepted for/Published in: JMIR Bioinformatics and Biotechnology
Date Submitted: Dec 28, 2022
Date Accepted: Jul 6, 2023
Development of a Web-Based GBA and LRRK2 Genetics Education Tool for Parkinson’s Disease: User and Usability Testing
ABSTRACT
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. Structured interviews were conducted with eleven movement disorder specialists (MDS) and thirteen PD patients to evaluate the content of IMAGINE-PD in user testing, and with twelve PD patients to evaluate the usability of a high-fidelity prototype according to the U.S. Department of Health and Human Services Research-Based Web Design & Usability Guidelines. Qualitative data analysis informed changes to create a final version of IMAGINE-PD.
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. Themes included ease of navigation, increased clarity on content, ease of use, in addition to other feedback points. 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. Clinical Trial: NA
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