Kauw Dirkjan, Repping-Wuts Han, Noordzij Alida, Stikkelbroeck Nike, Hermus Ad, Faber Marjan
Radboud University Medical Center, Department of Internal Medicine, Division Endocrinology, Nijmegen, Netherlands.
J Med Internet Res. 2015 Feb 25;17(2):e54. doi: 10.2196/jmir.3869.
Addison's disease and Cushing's syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care.
Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care.
For this study a consecutive sample of 300 questions ("threads") from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti.
From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences.
On an online patient forum for Cushing's syndrome and Addison's disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.
艾迪生病和库欣综合征较为罕见。荷兰肾上腺协会为荷兰肾上腺疾病患者提供了一个在线交流平台，方便他们相互结识和交流。然而，对于这样一个平台在提供以患者为中心的护理方面所具有的附加价值，人们了解甚少。
我们的目的是在以患者为中心的护理背景下，分析在线患者对患者论坛对话的目的。
在本研究中，从该论坛过去3.5年的问题（“主题帖”）中连续选取了300个样本。基于皮克研究所的以患者为中心的维度，对这些由患者发起的问题内容进行了分析。使用ATLAS.ti软件进行了此项分析。
在分析的390个问题中，8０.8%（N = 315）旨在获取更多关于疾病、治疗的信息，并核实其他患者是否有类似症状。在小得多的程度上（38/390，9.7%），问题表达了对情感支持的需求。患者的回答主要是给病友提供实用建议并分享自己的经历。
在一个关于库欣综合征和艾迪生病的在线患者论坛上，患者似乎主要从病友那里获得知识，在较小程度上获得情感支持。这种基于经验的知识已成为一个非常重要 的信息来源。因此，如果将这些知识整合到医护人员提供的护理中，患者可以为创建以患者为中心的护理做出重大贡献。
