PDF(Pubmed)
Abstract：
BACKGROUND: The mainstay of treatment for cervical dystonia (CD) is regular botulinum toxin injections every 3-4 months. Clinical evaluation of response is dependent on the patient\'s recall of how well symptoms responded to the previous injection. A mobile health app could assist both patients and health care professionals to monitor treatment benefits and side effects to assist with the selection of muscle and toxin dose to be injected at the next visit. The DystoniaDiary is a bespoke electronic health journal for monitoring symptoms of CD and response to treatment.
OBJECTIVE: The objective of this study was to assess the acceptability and utility of the DystoniaDiary in patients with CD treated with botulinum toxins as part of their usual care.
METHODS: In this open-label, single-center, single-arm observational study, patients attending a botulinum toxin injection clinic were invited to download the DystoniaDiary app. Patients selected up to 3 of their most troublesome CD symptoms (from a predefined list) and were prompted every 3 days to rate the control of these symptoms on a scale from 0 (very badly) to 100 (very well). Dates of onset and wearing off of response to injected botulinum toxin and responses to the Cervical Dystonia Impact Profile (CDIP-58) questionnaire at baseline and week 6 were also recorded in the app.
RESULTS: A total of 34 patients installed DystoniaDiary. Twenty-five patients (25/34, 74%) recorded data for ≥12 weeks and 21 patients (21/34, 62%) for ≥16 weeks. Median time between the first and last data input was 140 days with a median of 13 recordings per patient. User experience questionnaires at weeks 4 and 12 (20 respondents) indicated that the majority of respondents found the DystoniaDiary app easy to install and use, liked using it, would recommend it to others (19/20), and wished to continue using it (16/20). A smaller proportion indicated that the DystoniaDiary gave a greater sense of control in managing their CD (13/20). There was interindividual variation in patients\' perceptions of control of their symptoms after botulinum toxin injection. Response to treatment was apparent in the symptom control scores for some patients, whereas the severity of other patients\' symptoms did not appear to change after treatment.
CONCLUSIONS: This observational study demonstrated that the DystoniaDiary app was perceived as useful and acceptable for a large proportion of this sample of patients with CD attending a botulinum toxin clinic. Patients with CD appear to be willing to regularly record symptom severity for at least the duration of a botulinum injection treatment cycle (12-16 weeks). This app may be useful in monitoring and optimizing individual patient responses to botulinum toxin injection.
OBJECTIVE: The objective of this study was to assess the acceptability and utility of the DystoniaDiary in patients with CD treated with botulinum toxins as part of their usual care.
METHODS: In this open-label, single-center, single-arm observational study, patients attending a botulinum toxin injection clinic were invited to download the DystoniaDiary app. Patients selected up to 3 of their most troublesome CD symptoms (from a predefined list) and were prompted every 3 days to rate the control of these symptoms on a scale from 0 (very badly) to 100 (very well). Dates of onset and wearing off of response to injected botulinum toxin and responses to the Cervical Dystonia Impact Profile (CDIP-58) questionnaire at baseline and week 6 were also recorded in the app.
RESULTS: A total of 34 patients installed DystoniaDiary. Twenty-five patients (25/34, 74%) recorded data for ≥12 weeks and 21 patients (21/34, 62%) for ≥16 weeks. Median time between the first and last data input was 140 days with a median of 13 recordings per patient. User experience questionnaires at weeks 4 and 12 (20 respondents) indicated that the majority of respondents found the DystoniaDiary app easy to install and use, liked using it, would recommend it to others (19/20), and wished to continue using it (16/20). A smaller proportion indicated that the DystoniaDiary gave a greater sense of control in managing their CD (13/20). There was interindividual variation in patients\' perceptions of control of their symptoms after botulinum toxin injection. Response to treatment was apparent in the symptom control scores for some patients, whereas the severity of other patients\' symptoms did not appear to change after treatment.
CONCLUSIONS: This observational study demonstrated that the DystoniaDiary app was perceived as useful and acceptable for a large proportion of this sample of patients with CD attending a botulinum toxin clinic. Patients with CD appear to be willing to regularly record symptom severity for at least the duration of a botulinum injection treatment cycle (12-16 weeks). This app may be useful in monitoring and optimizing individual patient responses to botulinum toxin injection.
摘要：
背景：宫颈肌张力障碍（CD）的主要治疗方法是每3-4个月定期注射肉毒杆菌毒素。反应的临床评估取决于患者对先前注射的症状反应的回忆。移动健康应用程序可以帮助患者和医疗保健专业人员监测治疗益处和副作用，以帮助选择下次就诊时注射的肌肉和毒素剂量。DystoniaDiary是一本定制的电子健康杂志，用于监测CD的症状和对治疗的反应。
目的：本研究的目的是评估DystoniaDiary在接受肉毒杆菌毒素治疗的CD患者中的可接受性和实用性。
方法：在此开放标签中，单中心,单臂观察研究，参加肉毒杆菌毒素注射诊所的患者被邀请下载DystoniaDiary应用程序.患者选择了最多3种最麻烦的CD症状（从预定义的列表中），并每3天提示以0（非常差）至100（非常好）的等级对这些症状的控制进行评分。在基线和第6周，对注射的肉毒杆菌毒素的反应和对宫颈肌张力障碍影响概况（CDIP-58）问卷的反应的发作和磨损日期也记录在应用程序中。
结果：共有34例患者安装了DystoniaDiary。25例患者（25/34，74%）记录数据≥12周，21例患者（21/34，62%）记录数据≥16周。第一次和最后一次数据输入之间的中位数时间为140天，每位患者的中位数为13次记录。第4周和第12周的用户体验问卷（20名受访者）表明，大多数受访者发现DystoniaDiary应用程序易于安装和使用，喜欢用它,会推荐给其他人（19/20），并希望继续使用它（16/20）。较小的比例表明，DystoniaDiary在管理其CD时具有更大的控制感（13/20）。注射肉毒杆菌毒素后，患者对症状控制的看法存在个体差异。对治疗的反应在一些患者的症状控制评分中很明显，而其他患者的症状严重程度在治疗后似乎没有改变。
结论：这项观察性研究表明，DystoniaDiary应用程序被认为是有用的，并且对于大部分参加肉毒杆菌毒素诊所的CD患者样本是可以接受的。CD患者似乎愿意至少在肉毒杆菌注射治疗周期（12-16周）的持续时间内定期记录症状的严重程度。此应用程序可能有助于监测和优化个体患者对肉毒杆菌毒素注射的反应。
目的：本研究的目的是评估DystoniaDiary在接受肉毒杆菌毒素治疗的CD患者中的可接受性和实用性。
方法：在此开放标签中，单中心,单臂观察研究，参加肉毒杆菌毒素注射诊所的患者被邀请下载DystoniaDiary应用程序.患者选择了最多3种最麻烦的CD症状（从预定义的列表中），并每3天提示以0（非常差）至100（非常好）的等级对这些症状的控制进行评分。在基线和第6周，对注射的肉毒杆菌毒素的反应和对宫颈肌张力障碍影响概况（CDIP-58）问卷的反应的发作和磨损日期也记录在应用程序中。
结果：共有34例患者安装了DystoniaDiary。25例患者（25/34，74%）记录数据≥12周，21例患者（21/34，62%）记录数据≥16周。第一次和最后一次数据输入之间的中位数时间为140天，每位患者的中位数为13次记录。第4周和第12周的用户体验问卷（20名受访者）表明，大多数受访者发现DystoniaDiary应用程序易于安装和使用，喜欢用它,会推荐给其他人（19/20），并希望继续使用它（16/20）。较小的比例表明，DystoniaDiary在管理其CD时具有更大的控制感（13/20）。注射肉毒杆菌毒素后，患者对症状控制的看法存在个体差异。对治疗的反应在一些患者的症状控制评分中很明显，而其他患者的症状严重程度在治疗后似乎没有改变。
结论：这项观察性研究表明，DystoniaDiary应用程序被认为是有用的，并且对于大部分参加肉毒杆菌毒素诊所的CD患者样本是可以接受的。CD患者似乎愿意至少在肉毒杆菌注射治疗周期（12-16周）的持续时间内定期记录症状的严重程度。此应用程序可能有助于监测和优化个体患者对肉毒杆菌毒素注射的反应。
