Objective: Develop a smartphone application to collect patient-centered outcome (PCO) measures for dystonia.

Background: PCO measures tailored for each major adult-onset focal dystonia subtype (Cervical Dystonia (CD), Laryngeal Dystonia (LD), and Blepharospasm (BSP)) were developed to characterize motor, disability, and neuropsychiatric domains in patient expectations that may not be fully addressed by BoNT therapy. To identify which domains lack therapeutic response to BoNT, a way of conveniently recording and tracking PCO measures over time is needed.

Method: Monthly meetings were conducted with investigators in dystonia and software developers from TekSynap to generate ideas on developing a smartphone application able to conveniently record and track PCO measures. Beta testing occurred with a few select patients to improve app functionality and smartphone compatibility.

Results: A smartphone application (Symptom Snap) was developed for both Android and IOS operating systems. The app features a user-friendly interface with easy-to-read text, making data entry a straightforward process. Within the app, each dystonia subtype has its own set of questions (16 questions for CD, 15 questions for LD, and 18 questions for BSP) that are rated on a sliding scale from 0 to 10 (Figure 1). Additionally, a web-based admin panel was developed to track all data entered in the app (Figure 2). In an initial assessment, the app was used to record data from 2 BSP participants over 3 BoNT cycles. Total motor scores for both participants were calculated. In each cycle, both participants’ total motor symptom scores mirrored the expected “yo-yo” response to BoNT therapy with motor symptom improvement occurring around 4-6 weeks and motor symptom deterioration occurring around 8-10 weeks post injection (Figure 3).

Conclusion: Symptom Snap has proven its usefulness in capturing the “yo-yo” response from 2 BSP participants over 3 BoNT cycles. Other potential applications include validating the length of benefit of new therapies and determining the efficacy of adjunct treatments. Clinically, the app can function as a symptom tracker diary encompassing motor, disability, and neuropsychiatric domains that help clinicians and patients better characterize treatment responses. The app can also recognize domains not adequately treated by BoNT therapy, helping to guide the development of novel treatments for dystonia.

Figure 1

Figure 2

Figure 3

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-and-testing-of-a-smartphone-application-to-capture-patient-centered-outcome-pco-measures-for-dystonia/