An international survey of patients with cervical dystonia.

Abstract

This was an international survey undertaken to assess cervical dystonia (CD) patients own perceptions of their illness and its management. A total of 1,071 self-identified respondents with CD in 38 countries completed the online survey between March and December 2012. The mean time since diagnosis was 9.6 years and over half (54 %) of patients surveyed were not diagnosed in the first year. When asked how the symptoms of CD affected them, two-thirds (66 %) of patients reported they experienced a lot of pain, and 61 % said that they suffered depression and mood alterations; only 7 % reported no impact on their lives. Despite problems with the diagnosis, almost 70 % of respondents reported being satisfied with the overall relationship with their doctor. Patient treatment expectations were high, with 63 % expecting freedom from spasms and 62 % expecting freedom from pain. Over half (53 %) expected to be able to return to a normal routine (53 %). The most common treatment reported was botulinum toxin (BoNT) (86 %), followed by oral medication (58 %) and physiotherapy/physical therapy (37 %). Among patients treated on BoNT, 56 % were fairly/very satisfied, 25 % were fairly/very dissatisfied and 20 % were neither satisfied nor dissatisfied with the outcome. In conclusion, this international survey highlights the broad impact of CD on several aspects of patient life. Taken overall, the survey suggests that that patients need to be better informed about their condition, treatments available and the limitations of those treatments. It may be that realistically managing patient expectations of treatment would reduce the dissatisfaction of some patients.