Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA.
Department of Dermatology, Northwestern University Feinberg School of Medicine, NMH/Arkes Family Pavilion Suite 1600, 676 N Saint Clair, Chicago, IL, 60611, USA.
Arch Dermatol Res. 2023 Aug;315(6):1547-1552. doi: 10.1007/s00403-023-02528-2. Epub 2023 Jan 27.
Dermatologic conditions can have significant quality of life effects on patients. The internet is a first-line accessible resource for patients to seek support and community in managing dermatologic diagnoses. The accessibility and content of online support resources for patients with dermatologic conditions is unclear so we sought to characterize these resources. We conducted online searches utilizing incognito Google, Yahoo, and Bing search engines and identified a total of 36 support group resources. 9 links were for single dermatology support groups and 27 links were for databases of support groups for different dermatologic conditions. We tallied number totals and percentages of online support resources and found wide variability of material in terms of the readability of the group websites, as well as content, medium, and hosts of the groups. Furthermore, we observed an imbalance in representation of resources for certain dermatologic conditions as opposed to others, further highlighting the strong need for the creation of easy-to-access support groups for patients across the spectrum of dermatological disease.
皮肤病会对患者的生活质量产生重大影响。互联网是患者寻求支持和社区帮助以管理皮肤病诊断的一线资源。目前尚不清楚皮肤病患者在线支持资源的可及性和内容,因此我们试图对这些资源进行描述。我们利用隐身谷歌、雅虎和必应搜索引擎进行了在线搜索,共发现 36 个支持小组资源。其中 9 个链接是针对单一皮肤科支持小组的,27 个链接是针对不同皮肤科疾病支持小组数据库的。我们统计了在线支持资源的数量和百分比,发现小组网站的可读性、内容、媒介和小组主持人方面存在很大差异。此外,我们还观察到某些皮肤病资源的代表性与其他资源相比存在不平衡,这进一步凸显了为不同皮肤病患者创建易于访问的支持小组的强烈需求。