Objective: To evaluate all-cause healthcare resource utilization (HCRU) and costs in adults with isolated dystonia in the United States.
Background: Isolated dystonia is a rare, chronic movement disorder that remains underrecognized and undertreated, with diagnosis often delayed and symptoms misunderstood. The economic burden of isolated dystonia in adults remains poorly characterized.
Method: This retrospective study used US linked claims and electronic medical records from the IQVIA PharMetrics Plus database. A cohort of adults (N=20,951) receiving a first diagnosis (index date) of isolated dystonia between January 2017–December 2024 was identified. Each adult had 12-month continuous enrollment in health plan prior to (baseline) and post (follow-up) index date. All-cause HCRU and costs were assessed during the 12-month follow-up period.
Results: Mean number of physician office visits was 13.5 (SD, 15.7) per adult. 84.7% of adults filled at least one prescription (mean, 17.9 prescriptions filled; SD, 17). Approximately 27% of adults had at least one emergency room visit (mean, 2.2 emergency room visits; SD, 1.9). Laboratory/pathology tests (mean, 5.3; SD, 5.4) and outpatient surgical visits (mean, 3.0; SD, 3.2) were common. Approximately 7% of adults experienced at least one inpatient hospitalization, with a mean inpatient length of stay of 7.5 days (SD, 24.7). Mean total all-cause cost per adult per year was $14,290.2 (SD, $36,298.3). When evaluating specific services utilized, highest mean cost was associated with inpatient hospitalizations ($31,292.9; SD, $53,639.6), followed by pharmacy prescription fills ($4,473.5; SD, $18,207.0), surgical services ($2,750.5; SD, $6,918.8), botulinum toxin treatments ($2,447.9; SD, $2,784.6), emergency room visits ($1,839.0; SD, $3,721.8), and physician office visits ($1,714.2; SD, $7,402.6).
Conclusion: Adults with isolated dystonia have substantial HCRU, in particular, frequent physician office encounters. Both HCRU and costs showed high variability, suggesting a subset of adults accounts for a disproportionate amount of resources, particularly for inpatient hospitalizations. These findings also suggest limited treatment options, resulting in cost-intensive care including hospitalizations. Overall, this highlights the need for more effective treatments for isolated dystonia to improve patient outcomes and reduce costly care practices.
To cite this abstract in AMA style:
M. Oldham, J. Kerner, S. Dasgupta, J. Imperato, J. Thornton. Healthcare Resource Utilization and Associated Costs in Adults with Isolated Dystonia in the United States [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/healthcare-resource-utilization-and-associated-costs-in-adults-with-isolated-dystonia-in-the-united-states/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/healthcare-resource-utilization-and-associated-costs-in-adults-with-isolated-dystonia-in-the-united-states/