User and Usability Testing of a Web-Based Genetics Education Tool for Parkinson Disease: Mixed Methods Study

Area of Science:

• Neurogenetics
• Clinical Trials
• Digital Health

Background:

• Genetic testing for GBA and LRRK2 variants is crucial for Parkinson disease (PD) clinical trial enrollment.
• Limited access to trained genetic counselors presents a significant barrier to testing.
• Telehealth solutions can expand access to essential genetics education for patients and families.

Purpose of the Study:

• To develop and evaluate IMAGINE-PD, an interactive, web-based genetics education tool.
• To assess stakeholder feedback through user and usability testing to refine the tool for GBA and LRRK2 genetic testing in PD.

Main Methods:

• Content developed by genetic counselors and PD/neurogenetics experts.
• User testing with movement disorder specialists and PD patients.
• Usability testing of a high-fidelity prototype using established web design guidelines.

Main Results:

• User and usability testing identified key themes in content, function, and appearance.
• Feedback from specialists and patients informed iterative refinements to IMAGINE-PD.
• A consensus-driven approach ensured critical recommendations were implemented.

Conclusions:

• User and usability testing successfully refined IMAGINE-PD, creating a focused genetics education resource.
• The tool aims to improve the experience of GBA and LRRK2 genetic testing for PD patients.
• Further comparison with standard telegenetic counseling is underway.