Objective: Create recommendations for the electronic use of rating scales (e-scaled) owned or managed by the International Parkinson and Movement Disorder Society (MDS).

Background: Medicine is becoming increasingly digital with the use of mobile and electronic devices for collecting health-related data. The digitalization of medicine may reduce burden of care and make data available in real-time for clinical and research use while reducing study duration and costs. One consequence of this digitization is the electronic adaptation of validated paper-based clinical scales (e-scales). E-scales have many advantages such as easier data collection and storage, promotion of accurate and complete data, and facilitation of analytics. The use of e-scales may enable their remote administration to patients physically removed from clinical and research environments.

Method: 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, conducted between July 2018 and March 2019, totaled 1080 minutes (median: 29.2; interquartile range: 20.4-36.2).  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 between clinicians, patients and developers to develop the e-scale. 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.

Conclusion: We proposed 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.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/toward-the-digitization-of-the-international-parkinson-and-movement-disorder-society-rating-scales/