title: Causes for treatment delays in dystonia and hemifacial spasm: a Canadian survey.
abstract: BACKGROUND
  Dystonia must be accurately diagnosed so that treatment can be administered promptly. However, dystonia is a complex disorder, with variable presentation, which can delay diagnosis.
  
  
  METHODS
  Data were gathered by questionnaire from 866 patients with dystonia or hemifacial spasm (HFS) treated in 14 movement disorders centres in Canada injecting botulinum toxin, to better understand the path to diagnosis, wait times and obstacles to treatment.
  
  
  RESULTS
  Most participants were female (64.1%), mean age was 58 years, and patients consulted an average of 3.2 physicians before receiving a dystonia or HFS diagnosis. Many patients (34%) received other diagnoses before referral to a movement disorders clinic, most commonly "stress" (42.7%). A variety of treatments were often received without a diagnosis. The mean lag time between symptom onset and diagnosis was 5.4 years. After the decision to use botulinum toxin, patients waited a mean of 3.1 months before treatment. The most common diagnoses were cervical dystonia (51.6% of patients), HFS (20.0%) and blepharospasm (9.8%).
  
  
  CONCLUSIONS
  Survey results show that diagnosis of dystonias or of HFS, and therefore, access to treatment, is delayed. An educational program for primary care physicians may be helpful to decrease the time to diagnosis and referral to a specialist centre for treatment.
authors.affiliation: Movement Disorders Program, London Health Sciences Centre, University of Western Ontario, London, Canada.
authors.forename: Mandar
authors.initials: M
authors.lastname: Jog
authors.forename: Sylvain
authors.initials: S
authors.lastname: Chouinard
authors.forename: Doug
authors.initials: D
authors.lastname: Hobson
authors.forename: David
authors.initials: D
authors.lastname: Grimes
authors.forename: Robert
authors.initials: R
authors.lastname: Chen
authors.forename: Meetu
authors.initials: M
authors.lastname: Bhogal
authors.forename: Susan
authors.initials: S
authors.lastname: Simonyi
mesh_terms: D000328:Adult; D000367:Age Factors; D000368:Aged; D018726:Anti-Dyskinesia Agents / Q000008:administration & dosage*; D001905:Botulinum Toxins / Q000008:administration & dosage*; D002170:Canada / Q000453:epidemiology; D016009:Chi-Square Distribution; D004421:Dystonia / Q000175:diagnosis / Q000188:drug therapy*; D005260:Female; D006306:Health Surveys; D019569:Hemifacial Spasm / Q000175:diagnosis / Q000188:drug therapy*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D010820:Physicians / Q000523:psychology; D011795:Surveys and Questionnaires; D013997:Time Factors; D014187:Transportation of Patients; D055815:Young Adult
chemical_list: D018726:Anti-Dyskinesia Agents; D001905:Botulinum Toxins