Internet Accounts of Serious Adverse Drug Reactions A Study of Experiences of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis
Internet Accounts of Serious Adverse Drug Reactions A Study of Experiences of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis
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DOI：
10.2165/11631950-000000000-00000
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发表时间：
2012-01-01
期刊：
影响因子：
4.2
通讯作者：
Ferner, Robin E.
中科院分区：
文献类型：
--
作者：
Butt, Tehreem F.;Cox, Anthony R.;Ferner, Robin E.
工作背景：危及生命的药物不良反应（ADR），如Stevens-Johnson综合征（SJS）和中毒性表皮坏死松解症（TEN），在事件发生后很长时间内仍会影响患者的生活。幸存者和他们的亲属在很大程度上依赖于互联网资源的支持和建议，但叙述他们的经验张贴在病人的网站上还没有exploredprevious.Objectives：本研究的目的是照亮病人的经验，通过分析互联网的叙述药物引起的SJS和TEN，并考虑在病人的网站上张贴的原因，和他们反映的问题。我们还旨在比较这些经验与以前的研究进行面对面interview.Methods的SJS和TEN的幸存者：我们搜索了未经请求的个人叙述或描述的药物引起的SJS和TEN张贴在互联网上2009年2月至2010年6月之间，并分析了他们使用的主题定性approach.Results：我们分析了208互联网的描述。在互联网上发帖的动机包括希望分享经验和寻求他人的建议。患者及其亲属表示担心ADR可能具有遗传性，担心对生育能力的影响以及对复发的恐惧。他们还希望提高对药物潜在危害的认识，并告知其他人ADR的可疑原因，并与患者及其亲属进行更有效的沟通。互联网论坛张贴的患者的经验，ADR提供深入了解患者的关注和补充调查结果从详细的面对面interviews.Conclusion：个人经历SJS或TEN有许多未回答的问题和关注后很长一段时间的事件。我们的研究结果可以指导卫生专业人员管理ADR幸存者，并与患者及其亲属进行更有效的沟通。互联网论坛张贴的患者经验的ADR提供了深入了解患者的关注和补充的结果，从详细的面对面的访谈。
Background: Life-threatening adverse drug reactions (ADRs) such as Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) continue to affect patients' lives long after the event. Survivors and their relatives rely heavily on Internet sources for support and advice, but narratives of their experiences posted on patient websites have not been explored previously.Objectives: The aim of the study was to illuminate patient experience by analysing Internet narratives of drug-induced SJS and TEN and considering the reasons for postings on patient websites, and the concerns they reflect. We also aimed to compare these experiences with a previous study of survivors of SJS and TEN conducted by face-to-face interview.Methods: We searched for unsolicited personal narratives or descriptions of drug-induced SJS and TEN posted on the Internet between February 2009 and June 2010, and analysed them using a thematic qualitative approach.Results: We analysed 208 Internet descriptions. Motivation for posting on the Internet included a desire to share experiences and to seek advice from others. Patients and their relatives expressed concern that the ADR may be hereditary, worries about effects on fertility and a fear of recurrence. They also wished to increase awareness of the potential harms from medicines and to inform others of the suspected cause of the ADR, and in communicating more effectively with patients and their relatives. Internet forum postings of patient experiences of ADRs provide insight into patient concerns and supplement findings from detailed face-to-face interviews.Conclusion: Individuals experiencing SJS or TEN had many unanswered questions and concerns long after the event. Our findings could guide health professionals in the management of survivors of the ADR, and in communicating more effectively with patients and their relatives. Internet forum postings of patient experiences of ADRs provide insight into patient concerns and supplement findings from detailed face-to-face interviews.