Abstract
BackgroundBotulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects.MethodsAn internet-based survey was conducted through Carenity, a global online patient community, from May to September 2019. Eligible respondents were adults with CD who had ≥ 2 previous BoNT-A injections.Results209 respondents (81% females; mean age of 49.7 years) met the screening criteria. The mean BoNT-A injection frequency was 3.9 injections/year. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Symptom re-emergence between injections was common (88%); the time from injection to symptom re-emergence was 73.6 days (~ 10.5 weeks). Treatment was not reported to completely abolish symptoms, even at peak effect. However, symptom severity was rated (0 = no symptoms; 10 = very strong symptoms) as lowest at the peak of treatment effects (mean scores ~ 3/10), increasing as the effects of treatment start waning (~ 5.5/10) and was strongest one day before the next session (~ 7–8/10). The impact of CD on quality of life followed the same ‘rollercoaster’ pattern.ConclusionsThis survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning.
Highlights
Cervical dystonia (CD) is a chronic neurological syndrome primarily characterised by involuntary contractions of the cervical muscles of the neck, resulting in twisting and repetitive movements, or abnormal postures
When asked what improvements with Botulinum neurotoxin type A (BoNT-A) treatment they wanted to avoid symptom re-emergence between sessions, most respondents who suffer symptom re-emergence (n = 130/183, 71%) said they would like a longer lasting BoNT-A treatment, while few considered shorter intervals (15%), higher doses (4%) or more muscles injected (4%). This is one of the first surveys to provide in depth evaluation of how patients living with cervical dystonia (CD) experience the therapeutic effects of BoNT-A treatment and the quality of life impacts of symptom re-emergence between injection sessions
Similar to that reported by a previous survey [16], we confirmed peak BoNT-A therapeutic effects at 4.5 weeks, but with a generally predictable symptom re-emergence after about 10.5 weeks
Summary
Cervical dystonia (CD) is a chronic neurological syndrome primarily characterised by involuntary contractions of the cervical muscles of the neck, resulting in twisting and repetitive movements, or abnormal postures. Over time, the pharmacological effects of BoNT-A at the neuromuscular junction start to wane [9] leading to symptom re-emergence towards the end of. Botulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Conclusions This survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning
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