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Causes for Treatment Delays in Dystonia and Hemifacial Spasm: A Canadian Survey

Published online by Cambridge University Press:  02 December 2014

Mandar Jog ,
Sylvain Chouinard ,
Doug Hobson ,
David Grimes ,
Robert Chen ,
Meetu Bhogal  and
Susan Simonyi
Mandar Jog*
Affiliation:
Movement Disorders Program, London Health Sciences Centre, University of Western Ontario, London
Sylvain Chouinard
Affiliation:
Department of Neurology, University of Montreal, Montreal, Quebec
Doug Hobson
Affiliation:
Department of Medicine, Section of Neurology, University of Manitoba, Winnipeg, Manitoba, Canada
David Grimes
Affiliation:
Department of Medicine, Division of Neurology, The Ottawa Hospital, Ottawa, Ontario
Robert Chen
Affiliation:
Toronto Western Research Institute and Division of Neurology, Department of Medicine, University of Toronto, Toronto
Meetu Bhogal
Affiliation:
Allergan Canada Inc., Markham
Susan Simonyi
Affiliation:
Allergan Canada Inc., Markham
*
London Health Science Centre, Movement Disorders Clinic, 339 Windermere Road, London, Ontario, N6A 5A5, Canada
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Abstract

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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.

Type
Original Articles
Information
Canadian Journal of Neurological Sciences , Volume 38 , Issue 5 , September 2011 , pp. 704 - 711
Copyright
Copyright © The Canadian Journal of Neurological 2011

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