双相障碍患者的在线信息寻求：一项国际多中心调查的结果。
Online information seeking by patients with bipolar disorder: results from an international multisite survey.
机构信息
Department of Psychiatry and Psychotherapy, University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany.
ChronoRecord Association, Fullerton, CA, USA.
出版信息
Int J Bipolar Disord. 2016 Dec;4(1):17. doi: 10.1186/s40345-016-0058-0. Epub 2016 Aug 24.
BACKGROUND
Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information.
METHODS
A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data.
RESULTS
976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor.
CONCLUSION
Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.
背景
信息寻求是应对慢性疾病的重要应对机制。尽管心理健康网站越来越多，但对于双相情感障碍患者如何利用互联网获取信息，人们知之甚少。
方法
2014 年 3 月至 2016 年 1 月，采用 39 个问题的纸质匿名调查问卷，翻译成 12 种语言，对 17 个国家的 1222 名患者进行了便利抽样调查。所有患者均由精神科医生诊断为双相情感障碍。采用描述性统计和广义估计方程分析数据，以解释相关数据。
结果
1212 例有效应答中，1222 例（1212 例中有 1222 例为有效应答）患者中有 976 例（81%）使用互联网，其中 750 例（77%）查询双相情感障碍信息。在网上查询信息时，89%的患者使用电脑而不是智能手机，79%的患者从普通搜索引擎开始。查询的主要原因是药物副作用（51%）、匿名学习（43%）和帮助应对（39%）。约 1/3 的患者认为自己的搜索技能为专家，2/3 的患者认为自己的搜索技能为基础或中级。59%的患者更喜欢精神病网站，33%的患者更喜欢维基百科。只有 20%的患者阅读或参与过在线支持小组。大多数患者（62%）每年查询几次。大约 2/3 的患者认为在线信息查询有助于应对（整个样本中有 41%的患者认为如此）。约 2/3 的患者没有与医生讨论互联网上的发现。
结论
尽管替代信息来源仍然很重要，但在线信息查询对许多患者的帮助很大。大多数患者没有与医生讨论互联网上的发现，人们仍然担心在线信息的质量，特别是与处方药相关的信息。患者可能无法准确评估搜索技能，也可能不了解在线隐私的局限性。需要对患者进行更多的在线信息搜索教育，医生应该推荐一些高质量的网站。
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