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.
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: H A Jinnah; Ron Alterman; Christine Klein; Joachim K Krauss; Elena Moro; Marie Vidailhet; Robert Raike Journal: J Neural Transm (Vienna) Date: 2017-02-03 Impact factor: 3.575
Authors: Juan Benito-Lozano; Greta Arias-Merino; Mario Gómez-Martínez; Alba Ancochea-Díaz; Aitor Aparicio-García; Manuel Posada de la Paz; Verónica Alonso-Ferreira Journal: Int J Environ Res Public Health Date: 2022-05-26 Impact factor: 4.614
Authors: H A Jinnah; Alfredo Berardelli; Cynthia Comella; Giovanni Defazio; Mahlon R Delong; Stewart Factor; Wendy R Galpern; Mark Hallett; Christy L Ludlow; Joel S Perlmutter; Ami R Rosen Journal: Mov Disord Date: 2013-06-15 Impact factor: 10.338
Authors: Evan Tiderington; Emily M Goodman; Ami R Rosen; Edie R Hapner; Michael M Johns; Marian L Evatt; Alan Freeman; Stewart Factor; H A Jinnah Journal: J Neurol Sci Date: 2013-08-30 Impact factor: 3.181