Objective: The aim of this study was to gain the perspectives of clinicians who treat patients with CD in terms of assessment and treatment goals, disease awareness, intervention and follow up.

Background: Botulinum toxin is considered the treatment of first choice for cervical dystonia (CD); however, there are still unmet needs in the management of CD.

Method: Three online surveys (Survey Monkey^®) each consisting of approximately 25 clinician- and patient-related questions were circulated to an international cohort of clinicians whose specialties included neurology, movement disorders and physiatry (Survey 1 [n=29]; Survey 2 [n=51]; Survey 3 [n=21]). The individual results for each survey were collated and overall percentage scores calculated.

Results: The majority of surveyed clinicians (22/29; 76%) considered the Toronto Western Spasmodic Torticollis Rating Scale to be most appropriate for assessing CD. Almost all clinicians (27/29; 93%) set treatment goals, and most reported that 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 that general practitioners and general neurologists would benefit most from additional information on CD. Most respondents 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 used in combination with other therapies or procedures in the majority of cases. The majority of respondents regarded 3 treatment cycles as necessary to optimize the treatment strategy (13/17; 76%) and reported low discontinuation rates of 0-20% (12/17; 71%).

Conclusion: This survey represents a continuing endeavour to explore initiatives to improve the management of CD and suggests the need to address educational gaps with respect to increasing patient awareness and clinicians’ understanding of diagnostic criteria. Results suggest an optimal long-term treatment strategy requires patient and clinician alignment to at least 3 treatment cycles to assess safety and efficacy, which may lessen the likelihood of early treatment discontinuation.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/current-perspectives-on-the-management-of-cervical-dystonia-among-global-clinicians/