The Role of Online Support Communities Benefits of Expanded Social Networks to Patients With Psoriasis
The Role of Online Support Communities Benefits of Expanded Social Networks to Patients With Psoriasis
复制标题
DOI：
10.1001/archdermatol.2008.529
复制
发表时间：
2009-01-01
影响因子：
--
通讯作者：
Watson, Alice J.
中科院分区：
文献类型：
--
作者：
Idriss, Shereene Z.;Kvedar, Joseph C.;Watson, Alice J.
目的：为了确定人口统计学，使用模式，态度和经验的在线支持网站users.Design：在线调查患者：共260名受试者从5个在线银屑病支持groups.Main结果Measures：进行了探索性分析，以确定人口统计学和疾病的特点，在线支持网站的用户。结果：受访者的平均（SD）年龄为40.1（11.5）岁（范围，18-75岁），大多数（75.7%）是白色，女性（60.4%），大学学历（84.3%）。与使用在线支持网站相关的主要因素包括资源可用性（95.3%），方便性（94.0%），获得良好建议（91.0%）以及在处理个人问题时不会尴尬（90.8%）。最常见的活动是发布消息（65.0%）和搜索信息（63.1%）。近一半的受访者认为，自加入该网站以来，他们的生活质量（49.5%）和银屑病严重程度（41.0%）有所改善。参与在线支持活动的强度与生活质量的改善相关（P =. 002），但银屑病严重程度并未改善。结论：我们的数据表明，银屑病虚拟社区为用户提供了宝贵的教育资源以及心理和社会支持的来源。这些好处可以通过医生在这些社区内的参与来进一步增强。
Objective: To determine the demographics, usage patterns, attitudes, and experiences of online support site users.Design: Online survey.Patients: A total of 260 subjects recruited from 5 online psoriasis support groups.Main Outcome Measures: An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented.Results: The mean (SD) age of respondents was 40.1 (11.5) years ( range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P =. 002), but not with improvements in psoriasis severity.Conclusions: Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities.