Skip to main page content
Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2015;262(4):837-48.
doi: 10.1007/s00415-014-7586-2. Epub 2015 Jan 22.

An International Survey of Patients With Cervical Dystonia

Affiliations
Free PMC article

An International Survey of Patients With Cervical Dystonia

Cynthia Comella et al. J Neurol. .
Free PMC article

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.

Figures

Fig. 1
Fig. 1
Impact of CD on daily life a individual problems b overall areas of life. Base = 1,071 patients in survey. Patients were asked: after your first symptoms began a how did they affect and change your life? b Which of the following areas of life were affected when your symptoms were at their worst?
Fig. 2
Fig. 2
Expectations of treatment following discussion with a doctor. Base = 772 patients who had discussed expectations regarding treatment. Patients were asked: after discussing the different treatment options with your doctor, what were your expectations regarding your overall treatment plan?
Fig. 3
Fig. 3
Patient experience with botulinum toxin. Base = 907 patients who had received treatment with botulinum toxin. Asterisk a total of 77 patients (8 %) reported they received their BoNT injection when required. Patients were asked: 28. How do you rate the overall satisfaction of botulinum toxin treatment? Since receiving treatment with botulinum toxin have your symptoms improved, worsened or stayed the same? Based on your experience with botulinum toxin treatment, how long do you have to wait between treatments?
Fig. 4
Fig. 4
Reasons for not being satisfied with botulinum toxin. Base = 400 patients who did not report satisfaction with botulinum toxin treatment. Patients were asked: why were you not satisfied with your botulinum toxin treatment?

Similar articles

See all similar articles

Cited by 16 articles

See all "Cited by" articles

References

    1. Ben-Shlomo Y, Camfield L, Warner T. What are the determinants of quality of life in people with cervical dystonia? J Neurol Neurosurg Psychiatry. 2002;72(5):608–614. doi: 10.1136/jnnp.72.5.608. - DOI - PMC - PubMed
    1. Pekmezovic T, Svetel M, Ivanovic N, Dragasevic N, Petrovic I, Tepavcevic DK, Kostic VS. Quality of life in patients with focal dystonia. Clin Neurol Neurosurg. 2009;111(2):161–164. doi: 10.1016/j.clineuro.2008.09.023. - DOI - PubMed
    1. Muller J, Kemmler G, Wissel J, Schneider A, Voller B, Grossmann J, Diez J, Homann N, Wenning GK, Schnider P, Poewe W, Austrian Botulinum T, Dystonia Study G. The impact of blepharospasm and cervical dystonia on health-related quality of life and depression. J Neurol. 2002;249(7):842–846. doi: 10.1007/s00415-002-0733-1. - DOI - PubMed
    1. Chan J, Brin MF, Fahn S. Idiopathic cervical dystonia: clinical characteristics. Mov Disord. 1991;6(2):119–126. doi: 10.1002/mds.870060206. - DOI - PubMed
    1. Stacy M. Epidemiology, clinical presentation, and diagnosis of cervical dystonia. Neurol Clin. 2008;26(Suppl 1):23–42. doi: 10.1016/S0733-8619(08)80003-5. - DOI - PubMed

Publication types

LinkOut - more resources

Feedback