Cervical dystonia incidence and diagnostic delay in a multiethnic population

Background Current cervical dystonia (CD) incidence estimates are based on small numbers in relatively ethnically homogenous populations. The frequency and consequences of delayed CD diagnosis is poorly characterized. Objectives To determine CD incidence and characterize CD diagnostic delay within a large, multiethnic integrated health maintenance organization. Methods We identified incident CD cases using electronic medical records and multistage screening of more than 3 million Kaiser Permanente Northern California members from January 1, 2003, to December 31, 2007. A final diagnosis was made by movement disorders specialist consensus. Diagnostic delay was measured by questionnaire and health utilization data. Incidence rates were estimated assuming a Poisson distribution of cases and directly standardized to the 2000 U.S. census. Multivariate logistic regression models were employed to assess diagnoses and behaviors preceding CD compared with matched controls, adjusting for age, sex, and membership duration. Results CD incidence was 1.18/100,000 person‐years (95% confidence interval [CI], 0.35–2.0; women, 1.81; men, 0.52) based on 200 cases over 15.4 million person‐years. Incidence increased with age. Half of the CD patients interviewed reported diagnostic delay. Diagnoses more common in CD patients before the index date included essential tremor (odds ratio [OR] 68.1; 95% CI, 28.2–164.5), cervical disc disease (OR 3.83; 95% CI, 2.8–5.2), neck sprain/strain (OR 2.77; 95% CI, 1.99–3.62), anxiety (OR 2.24; 95% CI, 1.63–3.11) and depression (OR 1.94; 95% CI, 1.4–2.68). Conclusions CD incidence is greater in women and increases with age. Diagnostic delay is common and associated with adverse effects. © 2019 International Parkinson and Movement Disorder Society