Objective: To describe the processes for development and obtaining user feedback of the electronic versions of the MDS Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) and MDS Non-Motor Symptom Scale (MDS-NMS) by the Movement Disorder Society’s Electronic Clinical Outcome Assessment (MDS eCOA) Committee.

Background: Electronic versions of clinical scales (e-scales) have been shown to simplify data collection, remove the need for double-data entry, limit transcription errors and enable remote scale administration and data monitoring (1-3).  Furthermore, the use of electronic versions of traditional paper and pencil scales has increased following the recent SARS-CoV2 pandemic due to increased acceptance of remote health care and research (4).

Method: As a part of an ongoing effort to modernize the MDS portfolio of clinical rating scales, the MDS eCOA Committee created an e-scale template for the MDS-UPDRS and MDS-NMS. These e-scales are a digital reproduction of the paper and pencil versions. Upon completion of the e-scale template, user feedback from industry, movement disorder specialists and people with Parkinson’s disease (PD) will be obtained.

Results: In Parts 1 and 2 of this study we are collecting perspectives from industry and movement specialist users on the use of e-scales. Part 3 of the study targets the end users of the MDS-UPDRS part IB and II (Patient Questionnaire), people with PD. Participants will be invited to complete the MDS-UPDRS part IB and II on a computer, tablet, or phone. Following use of the e-scale, the participant will join a scheduled virtual meeting to partake in a structured interview asking questions about the e-scale’s ease of use. Following the interview, participants will complete The System Usability Scale (SUS). The interviews will be audio-recorded, and the recording will be transcribed after the interviews. The interview and SUS data will be analyzed using qualitative and quantitative methods.

Conclusion: The value and process of obtaining end user feedback for e-scales is of vital importance. Collecting end user feedback and the patient voice should be a mandatory part of any electronic build. This study is a critical first key step towards the digitalization of the MDS society’s scale portfolio.

References: 1. Visser M, Marinus J, Stiggelbout AM, van Hilten JJ. Assessment of autonomic dysfunction in Parkinson’s disease: The SCOPA-AUT. Mov Disord. 2004;19(11):1306–12.
2. Tröster AI, Pahwa R, Fields JA, Tanner CM, Lyons KE. Quality of life in Essential Tremor Questionnaire (QUEST): Development and initial validation. Park Relat Disord. 2005;11(6):367–73.
3. Di Lenarda A, Casolo G, Gulizia MM, Aspromonte N, Scalvini S, Mortara A, et al. The future of telemedicine for the management of heart failure patients: A Consensus Document of the Italian Association of Hospital Cardiologists (A.N.M.C.O), the Italian Society of Cardiology (S.I.C.) and the Italian Society for Telemedicine and eHealth (Digital S.I.T.). Eur Hear Journal, Suppl. 2017;19:D113–29.
4. Cubo E, Hassan A, Bloem BR, Mari Z; MDS-Telemedicine Study Group. Implementation of Telemedicine for Urgent and Ongoing Healthcare for Patients with Parkinson’s Disease During the COVID-19 Pandemic: New Expectations for the Future. J Parkinsons Dis. 2020;10(3):911-913. doi: 10.3233/JPD-202108. PMID: 32417800.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/electronic-development-of-the-mds-updrs-and-mds-nms-process-and-user-feedback/