Gain perspectives of clinicians who treat patients with cervical dystonia (CD) in terms of assessment and treatment goals, disease awareness, intervention and follow up.

Botulinum toxin is considered the first choice treatment for CD; however there are still unmet needs in the management of CD.

3 surveys (Survey Monkey®) each consisting of about 25 clinician and patient-related questions were circulated to an international cohort of neurology, movement disorders and physiatry clinicians (Survey 1 [n=29]; Survey 2 [n=51]; Survey 3 [n=21]). Individual results for each survey were collated and percentage scores calculated.

76% (22/29) of surveyed clinicians considered the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) to be most appropriate for assessing CD. Almost all clinicians (27/29;93%) set treatment goals, and most reported their patients expect these goals to be met within 3 months. Patients were most likely to have been symptomatic for 1-2 years prior to referral; delayed referrals were largely attributed to poor recognition of early symptoms. Respondents felt general practitioners and general neurologists would benefit from additional information on CD. Most agreed that patient awareness could be raised via social media (38/47;81%), and diagnosis expedited through collaboration with patient advocacy groups (41/47;87%). Almost all respondents (20/21;95%) reported using botulinum toxin (predominantly onabotulinumtoxinA) as first line therapy, which is often used in combination with other therapies or procedures. Majority of respondents regarded 3 treatment cycles as necessary to optimize treatment strategy (13/17;76%) and reported low discontinuation rates of 0-20% (12/17;71%).

Survey results suggest the need to address educational gaps with respect to increasing patient awareness and clinicians’ understanding of diagnostic criteria. Results suggest optimal long-term treatment strategy requires patient and clinician alignment to at least 3 treatment cycles to assess safety and efficacy, which may lessen likelihood of early treatment discontinuation.