Background

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.

Methods

An 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.

Results

209 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.

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.

中文翻译：

---

患者对 A 型肉毒杆菌神经毒素治疗颈肌张力障碍的看法。

背景

A 型肉毒杆菌神经毒素 (BoNT-A) 是治疗颈肌张力障碍 (CD) 的有效药物治疗，需要以不同的时间间隔重复给药。我们探讨了患者对 CD 影响和 BoNT-A 治疗效果减弱的看法。

方法

2019 年 5 月至 2019 年 9 月，通过全球在线患者社区 Carenity 进行了一项基于互联网的调查。符合条件的受访者是患有 CD 的成年人，他们之前注射过 ≥ 2 次 BoNT-A。

结果

209 名受访者（81% 为女性；平均年龄 49.7 岁）符合筛选标准。平均 BoNT-A 注射频率为 3.9 次/年。BoNT-A 治疗效果的平均报告时间为 11.7 天，达到峰值效果的时间为 4.5 周。注射之间的症状再次出现很常见（88%）；从注射到症状再次出现的时间为73.6天（~10.5周）。没有报道治疗可以完全消除症状，即使在达到峰值效果时也是如此。然而，症状严重程度被评为（0 = 无症状；10 = 非常严重的症状）在治疗效果的高峰期（平均得分 ~ 3/10）最低，随着治疗效果开始减弱（~ 5.5/10）和在下一次会议前一天最强（〜7-8/10）。CD 对生活质量的影响遵循同样的“过山车”模式。

结论

这项调查强调了 CD 症状的负担，即使在接受常规治疗的患者中也是如此。症状再次出现很常见，并且对日常活动和生活质量有重大影响。对 BoNT-A 治疗的治疗概况的更高认识应该会导致更明智的治疗讨论和计划。