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Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia

机译：争取更好的日子：患者对肉毒杆菌毒素治疗宫颈肌张力障碍的看法

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Background: The recommended reinjection interval for botulinum neurotoxin (BoNT) formulations in the treatment of cervical dystonia (CD) is generally ≥12 weeks, though intervals ≥10 weeks are approved for incobotulinumtoxinA in Europe. However, recurring symptoms can occur before the end of this period. Using qualitative research, we sought a greater understanding of disease burden, unmet patient needs, and barriers to treatment. Methods: We conducted online semistructured, focus-group discussions, and online forum follow-up discussions among patients with CD, focusing on disease burden, patient needs, injection cycle preferences, and relationships with health care professionals. A subset of patients was also questioned in telephone interviews about individual experiences of CD and BoNT treatment. All participants were UK residents who had received onabotulinumtoxinA or abobotulinumtoxinA for CD for ≥1 year. Results: Thirty-one patients (81% female; mean duration of CD 16.4 [range 4–31] years; mean BoNT injection cycle length 12.8 weeks) participated in the online focus-group and forum follow-up discussions. Of these, seven patients participated in telephone interviews. All had recurring symptoms between treatments, which substantially impacted on their work, family, and social life. Symptom severity fluctuated throughout an injection cycle and differed between patients and across injection cycles. Participants’ relationships with health care professionals and treatment satisfaction varied greatly. Many participants wanted longer-lasting and/or more stable symptom relief with shorter and/or more flexible injection intervals, according to individual needs. Lack of health care resources, long journeys to treatment centers, and immunogenicity/side-effect concerns were perceived as the main barriers to more flexible treatment. Conclusion: The high burden of recurring primary and secondary symptoms of CD considerably affects patients’ quality of life. Patient-led assessments of disease burden revealed that personalized, more flexible, and/or shorter BoNT injection intervals may reduce the day-to-day impact of CD. Collaboration between patients, clinicians, and health care systems may effect change and improve treatment for patients with CD.
机译：背景：肉毒杆菌神经毒素（BoNT）制剂在宫颈肌张力障碍（CD）治疗中的推荐重新注射间隔通常≥12周，尽管欧洲已批准间隔≥10周的incobotulinumtoxinA。但是，在此期间结束之前可能会出现复发症状。通过定性研究，我们寻求对疾病负担，未满足的患者需求以及治疗障碍的更多了解。方法：我们在CD患者中进行了在线半结构化，焦点小组讨论和在线论坛后续讨论，重点关注疾病负担，患者需求，注射周期偏好以及与医护人员的关系。电话采访中还询问了一部分患者有关CD和BoNT治疗的个人经历。所有参与者均为接受CD≥1年的肉毒杆菌毒素A或abobotulinumtoxinA的英国居民。结果：31名患者（81％为女性;平均CD持续时间为16.4 [4-31]年;平均BoNT注射周期为12.8周）参加了在线焦点​​小组和论坛的后续讨论。其中，有7名患者参加了电话采访。所有患者在两次治疗之间都有反复出现的症状，这严重影响了他们的工作，家庭和社交生活。症状严重程度在整个注射周期内波动，并且在患者之间和整个注射周期内均不同。参与者与医护人员的关系和治疗满意度差异很大。根据个人需要，许多参与者希望使用更短和/或更灵活的注射间隔来获得更持久和/或更稳定的症状缓解。缺乏医疗保健资源，到治疗中心的长途旅行以及对免疫原性/副作用的担忧被认为是更灵活治疗的主要障碍。结论：反复发作CD原发性和继发性症状的高负担极大地影响了患者的生活质量。以患者为主导的疾病负担评估表明，个性化，更灵活和/或更短的BoNT注射间隔可能会减少CD的日常影响。患者，临床医生和医疗保健系统之间的合作可能会影响CD患者的变化并改善其治疗。

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