Objective: To assess usability and user comprehension of a prototype of the PD Diary by MDS, a patient-centered digital tool designed to capture the impact of the disease on people with PD (PwP)

Background: Traditional PD diaries have primarily focused on motor fluctuations and often fail to capture the broader impact of PD on daily functioning [1]. To address this limitation, the MDS initiated the development of a patient-centered electronic diary (e-Diary). Phase I defined the conceptual framework and key specifications through a modified Delphi process involving multiple stakeholders, including PwP, care partners, PD specialists, industry, and regulators [2]

Method: Following Phase I, a development partner built the e-Diary prototype according to predefined specifications. The prototype underwent an initial usability evaluation cycle involving PwP and care partners in two activities: 1. Direct interaction with the prototype using mobile or desktop devices, followed by structured usability assessments (critical task completion questions, the System Usability Scale-SUS), and semi-structured one-to-one interviews. 2. Cognitive interviews to evaluate the clarity, comprehension and meaningfulness of symptom and activity wording and rating formats (categorical and visual analog scales)

Results: Fourteen participants (PwP across disease stages Hoehn and Yahr 1-4 and care partners) completed the usability assessment. Most participants were able to complete key tasks within the prototype, including symptom rating, recording fluctuations, and medication entry, although isolated difficulties were reported. Cognitive interviews indicated that categorical response options were generally easier to interpret than visual analog scales, while activities were easier to understand than symptom descriptions, which were sometimes perceived as overly clinical. Usability testing identified actionable areas for improvement, including navigation of symptom lists, medication entry workflows, and clearer patient-centered language

Conclusion: The PD Diary by MDS has progressed from conceptual design to a functional prototype through an iterative user-centered development process. A revised version has been implemented, and a second usability testing cycle is currently underway. Future steps include preliminary validation of the e-Diary as a patient-centered digital outcome measure for clinical care and research in PD

References: 1 Vizcarra JA, Sánchez-Ferro Á, Maetzler W, et al. The Parkinson’s disease e-diary: Developing a clinical and research tool for the digital age. Mov Disord. 2019;34:676–681.

2 Rábano-Suárez P, Monje MHG, Vizcarra JA, et al. MDS PD e-Diary: A new patient-centered digital tool in development for people with Parkinson’s disease. Mov Disord Clin Pract. 2025. doi:10.1002/mdc3.70305.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-pd-diary-by-mds-development-and-early-usability-testing-of-a-patient-centered-digital-tool-for-parkinsons-disease/