Assessment of anticonvulsant effectiveness and safety in patients with Angelman's syndrome using an Internet questionnaire.
Assessment of anticonvulsant effectiveness and safety in patients with Angelman's syndrome using an Internet questionnaire.
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使用互联网问卷评估天使综合征患者的抗惊厥有效性和安全性。
DOI：
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发表时间：
2003
影响因子：
2.7
通讯作者：
Wenee L Lopez
中科院分区：
文献类型：
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作者：
Daniel H Nolt;J. Mott;Wenee L Lopez
使用互联网问卷从照顾者那里收集有关Angelman综合征(AS)患者的癫痫发作活动和药物治疗的数据。编制了一份问卷，收集AS患者的人口统计学、癫痫类型、实验室诊断和过去的抗惊厥药物使用史的数据，并主要通过互联网在多个AS小组的成员中分发。AS患者的护理人员被要求对问卷上列出的每一种药物对患者的行为和警觉性以及患者癫痫发作的严重程度和频率的影响进行评级。采用6分评定量表，最低分代表最有利的效果。这项调查的主要考虑是以广泛理解的形式匿名、迅速地接触到尽可能多的人。数据是在2002年3月22日至10月9日期间收集的。在收到的88份完整问卷中，75份是电子问卷，13份是手写回复。47%的受访者报告说，患者在某个时候使用了一种药物组合，描述了59种不同的组合，其中21种包括三种或更多药物。最常报道的方案是丙戊酸和氯硝西潘，丙戊酸和托吡酯(加或不加氯硝西潘)，丙戊酸和拉莫三嗪，以及苯妥英和卡马西平。患者特征和发作类型与文献中描述的AS患者一致。托吡酯和乙硫胺的评价良好，与之前发表的报告一致。对问卷的答复广泛而迅速，在第一周就收集了42份答复。互联网问卷帮助从AS患者的照顾者那里收集自我报告的疗效信息。
An Internet questionnaire was used to collect data from caregivers about seizure activities and drug therapies of patients with Angelman's syndrome (AS). A questionnaire to collect data on AS patient demographics, seizure types, laboratory diagnosis, and past history of anticonvulsant use was developed and distributed among the membership of multiple AS groups primarily through the Internet. Caregivers of AS patients were asked to rate each drug listed on the questionnaire for its effect on the patient's behavior and alertness and on the severity and frequency of the patient's seizures. A 6-point rating scale was used, with the lowest score representing the most favorable effect. Primary considerations of the survey were to reach as many people as possible, anonymously and quickly, in a widely comprehensible format. Data were collected between March 22 and October 9, 2002. Of the 88 complete questionnaires received, 75 were electronic and 13 were handwritten responses. Forty-seven percent of respondents reported patients' use of a combination of medications at some point, with 59 different combinations described, 21 of which consisted of three or more medications. The most commonly reported regimens were valproic acid and clonazepam, valproic acid and topiramate (with or without clonazepam), valproic acid and lamotrigine, and phenytoin and carbamazepine. Patient characteristics and seizure types were consistent with those of AS patients described in the literature. Topiramate and ethosuximide were rated favorably, consistent with previously published reports. Responses to the questionnaire were widespread and rapid, with 42 responses collected in the first week. An Internet questionnaire helped collect self-reported efficacy information from caregivers of AS patients.