How long does it take to diagnose cervical dystonia?

Abstract

Background Dystonia is a neurological disorder characterized by involuntary twisting movements and postures. The neck is among the most commonly affected regions, and diagnosis can be made readily through a simple clinical evaluation. The goal of this study was to explore how long it took patients to receive a diagnosis of cervical dystonia after symptom onset. Methods A structured questionnaire was administered at outpatient clinics of a tertiary care academic medical center to 146 consecutively evaluated patients. The questionnaire addressed the length of time from symptom onset to diagnosis, the numbers and types of providers seen before reaching a diagnosis, and treatments attempted prior to receiving botulinum toxin. Results A total of 108 patients saw a mean of 3.5 providers over a mean period of 44 months from symptom onset to diagnosis. For patients with symptom onset in the last decade only, patients saw a mean of 3.0 providers over a mean of 14 months. Conclusions Although cervical dystonia is the most common form of dystonia with clinical features readily identifiable by a simple history and examination, patients typically see multiple providers over more than a year before reaching a diagnosis and receiving optimal therapy. Improved awareness of the clinical features will enable patients to obtain appropriate therapy more rapidly.

Diagnostic delay in adult-onset dystonia: Data from an Italian movement disorder center

“…The results of our survey add to those from other single-center studies performed in Canada, Australia, and the USA [2][3][4]. These studies reported that diagnosis of AOD may be delayed for several years and that many patients visit numerous physicians in the interim.…”

“…Three formal single-center studies showed that diagnosis of AOD may be delayed for several years; the average lag time between symptom onset and diagnosis was 3.8 years in an Australian study [2], 6.4 years in a Canadian survey [3], and 3.7 years in a study focusing on CD patients from the USA [4].…”

Diagnosis and Treatment of Dystonia

“…Even for the most common and readily diagnosed subtypes of dystonia such as cervical dystonia, the mean time from onset of symptoms to diagnosis is 4–6 years. 31–33 These delays in reaching a diagnosis often lead to frustration and mistrust of medical providers. Education and counseling are important for regaining trust so that patients are more likely to accept recommendations.…”

Wissenswertes zu Dystonien

“…Al lerdings ist die Prävalenz wegen methodischer Schwierigkeiten nicht exakt zu bestimmen. Die durchschnittliche Latenz zwischen Erstmanifestation und Diagnose einer isolierten Dystonie betrug 1995 knapp 4 Jahre und konnte in der Zwischenzeit nicht relevant verkürzt werden [28,34]. Dystonien sind ein heterogenes Krank heitsbild und stellen auch den erfahrenen Neurologen vor diag nostische Herausforderungen.…”