Objective: This study aims to evaluate the user experience of the newly developed electronic versions of the MDS Unified Parkinson’s Disease Rating Scale (e-MDS-UPDRS) and MDS Non-Motor Rating Scale (e-MDS-NMS).

Background: Electronic versions of clinical scales (e-scales) have been shown to provide easier data collection, eliminate the requirement for double data entry, reduce transcription errors, and facilitate remote scale administration and data monitoring (1-3). Furthermore, the transition from the use of traditional paper and pencil scales to their electronic versions has grown in recent years, increasing the acceptance and opportunities for remote health care and research (4,5).

Method: The International Parkinson and Movement Disorder Society’s Electronic Clinical Outcome Assessment (MDS eCOA) Committee created electronic MDS-UPDRS and MDS-NMS templates. These e-scales are digital reproductions of the paper and pencil versions. In Phase I of this project, participants from industry, movement disorder specialists and people with Parkinson’s disease (PwP) used the MDS-developed e-scale templates. After that, the participants i) completed the System Usability Scale (SUS) and later ii) took part in a structured interview to gather all relevant feedback about the user experience. The SUS and interview data were analyzed using quantitative and qualitative methods.

Results: All participants (4 industry users, 8 specialists and 10 PwP) completed the e-scale (e-MDS-UPDRS and/or e-MDS-NMS, as appropriate) on a computer, tablet, or phone. All participants described the templates as easy to use, highlighting their good readability, navigation, and data entry. Industry participants expressed that implementing the MDS-e-scale templates will save them substantial time in the e-scale development; however, some simple back-end formatting adjustments may need to be integrated into their corresponding platforms. Specialists suggested improving the data score sheet to allow [SA1] direct input of the question’s scores. SUS scores were 73.8 (95% CI 53.1- 94.4); 70.3 (95% CI: 53.3-87.3), and 89.8 (95% CI: 85.1-94.4) for industry, specialists and PwP respectively.

Conclusion: This study is a critical first step towards digitalizing MDS’s scale portfolio. End-user feedback on the MDS e-scales is vital to optimizing these tools and assuring their acceptability and added value to future users.

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.
5. Monje, M.H.G., Fuller, R.L.M., Cubo, E., Mestre, T.A., Tan, A.H., Stout, J.C., Ali, S., Chahine, L., Dujardin, K., Fitzer-Attas, C.J., Youn, J., Bloem, B.R., Horak, F.B., Merola, A., Reilmann, R., Paul, S.S., Dorsey, E.R., Maetzler, W., Espay, A.J., Martinez-Martin, P., Stebbins, G.T., Sánchez-Ferro, Á. and (2021), Toward e-Scales: Digital Administration of the International Parkinson and Movement Disorder Society Rating Scales. Mov Disord Clin Pract, 8: 208-214. https://doi.org/10.1002/mdc3.13135

« Back to 2024 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/acceptability-and-user-experience-of-the-electronic-versions-of-the-mds-updrs-and-mds-nms-scales/