Objective: To assess the change in therapy for dystonia over time

Background: Although botulinum toxin (BoNT) injections are the gold standard therapy for patients with focal dystonia, oral medications are often recommended (1). We recently found in a large international cohort of dystonia patients a potential therapeutic gap with many patients not reporting use of the gold standard therapy (2). We proposed a longitudinal study to better characterize changes in medication use over time.

Methods: We performed a longitudinal study of de-identified individual data collected from the participating sites in the Dystonia Coalition (NCT01373424). We included patients with at least one follow-up visit from 2012-2015 and had focal dystonia (n=258). We defined those who “stayed” on BoNT therapy as reporting use continuously from 2012 to 2015. We defined “ever been” as those with continuous BoNT use as well as those who skipped some years between 2013-2015. “Gone” were those that reported BoNT in 2012 but never again. We categorized oral medication use in the same way.

Results: We found for BoNT use, only 18.8% (13/69) “stayed” for the whole study duration from 2012-2015 while 8.7% (6/69) were “gone” with  72.5% (50/69) in the “ever been” category. Oral medications commonly used in dystonia treatment showed a similar trend with only 5% (2/40) of patients “staying” on oral therapy from 2012-2015, 22.5% (9/40) were “gone”, and 72.5% (29/40) “ever been”. When we looked at factors affecting staying on therapy for either BoNT or oral, anxiety and/or depression was significant indicating that anxiety/depression were associated with higher rates of discontinuing medication use (p=0.002 respectively). When looking at BoNT use alone, duration of disease was associated with greater maintenance of therapy (p=0.073)—similarly a trend toward greater maintenance with older age was also present though not statistically significant (p=0.277).

Conclusions: In this study of dystonia patients within five years of diagnosis, we found a low rate of maintenance in both the gold standard therapy, BoNT, as well as oral medications commonly used to treat dystonia. Co-morbid factors of anxiety and depression played a significant role in medication maintenance over time, indicating that these symptoms may need to be addressed as well as the motor symptoms to improve focal dystonia treatment over the long-term.

References: 1. Balint & Bhatia, Curr Opin Neurol (2014) 27:468-476

2. Pirio Richardson, et al., Neurology (accepted)

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MDS Abstracts - https://www.mdsabstracts.org/abstract/dystonia-treatment-in-an-international-cohort-a-longitudinal-analysis/