Isolated Cervical Dystonia: Management and Barriers to Care

Area of Science:

• Neurology
• Movement Disorders
• Epidemiology

Background:

• Cervical dystonia (CD) is a rare neurological movement disorder characterized by involuntary neck muscle contractions.
• Delayed diagnosis is common due to limited healthcare provider awareness of CD's varied clinical presentations.
• Understanding CD's epidemiology and patient journey is crucial for improving care.

Purpose of the Study:

• To determine the prevalence, age of onset, disease progression, and treatment strategies for cervical dystonia.
• To identify barriers encountered by patients in diagnosis, follow-up, and treatment.
• To explore potential gender-based differences in CD presentation and treatment response.

Main Methods:

• Retrospective review of 149 cervical dystonia patients from specialized Dystonia Clinics over 14 years.
• Assessment of dystonia severity using Burke-Fahn-Marsden (BFM), Tsui, and Toronto Western Spasmodic Torticollis Rating Scales (TWSTRS).
• Evaluation of mood and quality of life using Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), and 36-Item Short Form Health Survey (SF-36).

Main Results:

• The cohort was predominantly White (91.3%) and female (75.8%).
• Men exhibited an earlier median age of onset (40.5 years, p=0.044) despite a 3-fold higher incidence in women.
• CD severity correlated with physical functioning, pain, and general health, while anxiety and depression levels were minimal.

Conclusions:

• Significant gender differences exist in cervical dystonia prevalence and age of onset.
• Patients face care barriers affecting quality of life and diagnostic timelines.
• Males showed less benefit from botulinum toxin and higher discontinuation rates, underscoring the need for increased provider awareness to reduce diagnostic delays.