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Objective: While multiple oral medications are used to treat dystonia, limited information exists on current prescribing practices. This study analyzes prescribing practices for dystonia in the United States, evaluating variations in dosing and impact of co-morbidities. Methods: Querying the Cerner Real World database from 2014 to 2019 for children age 0-18 with an ICD-10 diagnosis containing “dystonia” resulted in 11,300 inpatient and outpatient encounters. Information extracted included current dystonia medications (baclofen, clonidine, carbidopa-levodopa, gabapentin, tetrabenazine, trihexyphenidyl, and benzodiazepines including diazepam, clonazepam, midazolam, and lorazepam), medication dosing, and co-morbid diagnoses of cerebral palsy, epilepsy, or spasticity. Encounters without current weight were excluded from medication dosage analysis. Results: Benzodiazepines were most commonly prescribed for dystonia (61.2%), then baclofen (12.0%) and clonidine (9.5%). Patients with cerebral palsy (n=5639) were prescribed baclofen more than clonidine (16.2% vs 7.0%), while patients without cerebral palsy (n=5731) were prescribed clonidine more frequently than baclofen (11.7% vs 7.6%). All medications showed decreased mean dosing in milligram per kilogram (mg/kg) as patient weight range increased. Mean weight-based dosing for baclofen varied by weight group from 0.162 mg/kg/dose (110-120 kg group, mean dose 18.3 mg) to 0.662 mg/kg/dose (0-20 kg group, mean dose 9.3 mg). Conclusion: Benzodiazepines, baclofen, and clonidine are the most common medications prescribed for dystonia in the United States. Medication dosing is variable, with patients of higher weights receiving smaller weight-adjusted doses. There is a need for dystonia medication selection and dosing guidelines to standardize care and inform dosing recommendations for clinical trials.


Neurology | Pediatrics


Presented at the 52nd Children's Neurology Society Annual Meeting; Vancouver, BC; October 4-7, 2023.

National Prescribing Practices for Dystonia Among Providers in the United States