Objective: To describe the initial steps to develop a digital diary (e-Diary) for Parkinson’s disease (PD) – an MDS initiative of a novel patient-centered digital tool for People with Parkinson’s (PwP).

Background: Traditionally, diaries have been used in PD research to monitor motor fluctuations, often overlooking other motor and non-motor features [1,2]. Recognizing this gap, MDS saw an opportunity to revamp diaries to better address the needs of PwP and other stakeholders involved in their care. An e-Diary can comprehensively capture motor and non-motor symptoms that impact daily life over the course of the disease.

Method: The first phase of the e-Diary development occurred in 2023. Our main goal was to understand the needs of five key stakeholder groups (PwP, care partners, PD specialists, industry, and regulatory bodies) to inform the creation of the MDS PD e-Diary as a novel outcome measure. We employed a modified Delphi method [3], involving three rounds of iterative feedback collection: open-ended surveys, surveys with 5-point Likert scale statements, and in-person and online focus groups. Additionally, we collected feedback from a broader PD community via an online survey.

Results: All five stakeholder groups concurred that improved tools are necessary for tracking PD progression. Key recommendations included designing the e-Diary to assess various PD-related activities and symptoms differently as the disease advances. The e-Diary should be accessible via multiple platforms, offering both Personal and Research modes using accessible visual analog scales, categorical anchors, or both. The Personal mode, tailored for clinical and self-management purposes, allows PwP, care partners, and healthcare providers to customize monitoring based on a bank of relevant PD symptoms and activities, such as medication tracking or reminders. The Research mode serves as an endpoint in trials, using a fixed set of validated items. Confidentiality will be safeguarded between Personal and Research modes. A first mockup of the e-Diary has been created using UI/UX tools to reflect these specifications.

Conclusion: Phase I of the MDS e-Diary for PD has successfully established the specifications of a patient-centered digital tool, catering to clinical and research needs. Ongoing development and validation efforts aim to ensure that the e-Diary meets the evolving needs of PwP.

References: 1 Vizcarra JA, Sánchez-Ferro Á, Maetzler W, et al; MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee. The Parkinson’s disease e-diary: Developing a clinical and research tool for the digital age. Mov Disord. 2019 May;34(5):676-681.

2 van Uem JM, Marinus J, Canning C, van Lummel R, Dodel R, Liepelt-Scarfone I, Berg D, Morris ME, Maetzler W. Health-Related Quality of Life in patients with Parkinson’s disease–A systematic review based on the ICF model. Neurosci Biobehav Rev. 2016 Feb;61:26-34.

3 Niederberger M. and Spranger J. Delphi Technique in Health Sciences: A Map. Front. Public Health (2020) 8:457.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/mds-pd-e-diary-a-new-patient-centered-digital-tool-for-people-with-parkinsons-disease/