Electronic Use of International Parkinson and Movement Disorders Society Scales
Developed by the Rating Scales Electronic Development Committee
Abstract
Title: Electronic use of Movement Disorder Society Rating scales
Objective: Create recommendations for the electronic use of the International Parkinson and Movement Disorder Society (MDS) Rating scales (e-scales).
Background: The use of electronic devices for collecting health-related data has grown in the last decades. A consequence of this digitalization is the electronic adaptation of validated paper-based clinical scales (e-scales). E-scales have many advantages, such as: 1) efficient data collection, 2) promotion of accurate and complete data, 3) rapid access to previous evaluations and 4) remote administration of the scale.
Methods: We conducted semi-structured interviews to define the use of e-scales and their ideal implementation with 24 participants (7 developers, 4 patients, 5 caregivers, 4 movement disorders specialists and 4 study coordinators) with varied e-scale experience, to identify themes representing the experience of using scales and their best implementation in electronic format. The interviews were conducted between July 2018 and March 2019. Systematic text content analyses of verbatim transcriptions of each interview was done using qualitative research techniques. Data saturation was reached with this sample.
Results: Eighteen themes about desirable attributes and recommendations for developing e-scales were extracted from the interviews. The most salient themes were to ensure: (i) clear instructions on the use of e-scales and (ii) regular and agile interactions among patients, clinicians and developers. Insights from the interviews were subsequently incorporated into a set of guidelines for the design, testing, production and implementation of e-scales. We coded Hypertext Markup Language for designing MDS e-scales on RedCap, a common digital data platform. HTML access for some MDS-scales is available through MDS with permission upon request.
Conclusion: We propose a digital framework for the standardized development of MDS e-scales to leverage their value for movement disorders specialists, health-care providers, patients and caregivers and associated electronic resources for commonly used scales that can be found in the attachments below this abstract.