Objective: To determine the rates of clinical under-documentation of leg dystonia in people with cerebral palsy (CP).
Methods: In this prospective cohort study, we identified independently ambulatory people age 10-20yo with CP-associated spasticity seen in a tertiary care CP center between 1/1/20 to 11/4/21. Three pediatric movement disorders specialists assessed gait videos from these visits for leg dystonia using the Global Dystonia Rating Scale. We compared the gold standard expert consensus assessment for each patient with the clinical documentation of dystonia during a contemporaneous CP Center clinic visit and also with dystonia documentation longitudinally in their medical record.
Results: Of 116 people with CP-associated spasticity assessed in this study, 70 were found to have leg dystonia in their gait videos. Only 13% of these 70 individuals (n=9/70) had leg dystonia documented in their contemporaneous CP Center clinic visit, even though they were assessed during this visit by clinicians well-trained in CP and dystonia assessment. Even with repeated assessment, only 54% (n=38/70) of these individuals had leg dystonia documented in their medical record.
Conclusions: Leg dystonia is clinically under-documented in people with CP-associated spasticity, even when these people are evaluated by well-trained clinicians. Longitudinal evaluation and vigilance for leg dystonia is critical to address this diagnostic gap.
Keywords: Dystonia; cerebral palsy; diagnosis.