Objective: To develop an electronic version of the Hauser diary, commonly used in clinical trials to assess motor fluctuations and dyskinesia in patients with Parkinson’s disease (PD).

Background: The Hauser diary [1] is a valuable tool to assess motor fluctuations in PD patients. It requires intensive use, requiring patients to record for each 30-min segment of the waking day when medication is thought to be providing motor fluctuation benefits, when such effects have worn off, and when dyskinesias are experienced. The diary is recommended for self-completion at home over 2-4 day intervals, periodically within a clinical trial.

Pen-and-paper completion may be subject to questions of data integrity and quality as timely completion cannot be assured, recall over time may be inaccurate, and the fine motor skills required in its completion may be challenging at times [2].

Method: We developed an electronic version (tablet/smartphone) of the Hauser diary, focusing on ease of use for PD patients. Qualitative interviews in PD patients were conducted to understand the usability of the solution and guide iterative design decisions.

Results: Patient interviews helped to establish eDiary design principles. Patients experiencing tremor and small joint mobility issues preferred to use their knuckle for touchscreen actions, as opposed to a fingertip or stylus. eDiary “touch areas”, therefore, needed to reliably accept feedback from the knuckles. Patients indicated that eDiary components should be large and separated sufficiently to enhance usability and readability.

A scrollable daily record, in landscape format, with a single 30-min interval per screen was developed to achieve these design considerations. Patient feedback on the eDiary design was positive. One patient concluded: “An eDiary would be my preferred method to use. The layout is nice and I like the bird alarm [completion reminder]. I might get a man bag to carry it”. A further patient stated: “The eDiary is definitely better than scribbling on a piece of paper. I can see myself using it”.

Conclusion: Collecting patient-reported outcomes data electronically is valuable in addressing the known limitations of paper collection [2]. Good usability of electronic solutions is vital to ensure ongoing completion. This study provides initial positive feedback on the design and usability of an electronic version of the Hauser diary.

References: [1] Hauser RA, Friedlander J, Zesiewicz TA et al. A home diary to assess functional status in patients with Parkinson’s disease with motor fluctuations and dyskinesia. Clin Neuropharmacol. 2000; 23: 75-81.
[2] Byrom B, Muehlhausen W. Electronic Patient-Reported Outcome Measures: An Implementation handbook for Clinical Research, Second Edition. 2023. ISBN: 9798387922077.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-development-of-an-electronic-motor-symptoms-diary-for-parkinsons-disease-using-qualitative-patient-insights/