Schook Romane M, Linssen Cilia, Festen Jan, Schramel Franz Mnh, Lammers Ernst, Zaanen Peter, Postmus Pieter E
VU University Medical Center, Department of Pulmonary Diseases, Amsterdam, Netherlands.
Interact J Med Res. 2013 Aug 6;2(2):e15. doi: 10.2196/ijmr.1749.
In 2003 the Dutch Lung Cancer Information Centre (Longkanker Informatie Centrum) launched a website containing information on lung cancer accessible to anyone.
Our study aim was to inventorize the information needs of the visitors of this website by analyzing the questions they asked the lung cancer specialists in the websites interactive section "Ask the Physician".
The first 2000 questions posted up until May 2006 have been classified by visitors' wish, type of required information, identity, gender, and phase during treatment course.
Our results show that 1893 (1158/1893, 61%) of the questions were asked by a loved one/caregiver and (239/1893 13%) by patients. 1 out of 3 questions was asked by a daughter/grand-daughter. Most questions concerned specific information on lung cancer and lung cancer course (817/1893, 43%). The most inquired specific information topics were therapy side effects, diagnostics, general information on lung cancer, and regular therapy. Furthermore, questioners wanted to verify their own doctor's information (122/1893, 6%), a diagnosis (267/1893, 14%), and a prognosis (204/1893, 11%).
Lung cancer patients and their caregivers asked the most questions in the interactive website section. The most frequently requested information was more detailed information. These include specific information on lung cancer (regular therapy, diagnostics, and disease symptoms), verification of what the doctor has said, diagnosis, and prognosis. Most of the requested information could have been obtained from treating specialists, indicating that current information supply to lung cancer patients and their caregivers may not be matching their needs sufficiently. The further implementation of an online dialogue with lung cancer specialists might be a solution.
2003年，荷兰肺癌信息中心推出了一个网站，任何人都可以访问该网站上有关肺癌的信息。
我们的研究目的是通过分析访问者在网站互动板块“向医生提问”中向肺癌专家提出的问题，来梳理该网站访问者的信息需求。
截至2006年5月发布的前2000个问题，已按照访问者的意愿、所需信息类型、身份、性别以及治疗过程中的阶段进行了分类。
我们的结果显示，1893个问题中，有1158个（占61%）是由亲人/护理人员提出的，239个（占13%）是由患者提出的。每3个问题中就有1个是由女儿/孙女提出的。大多数问题涉及肺癌及肺癌病程的具体信息（817个，占43%）。询问最多的具体信息主题是治疗副作用、诊断、肺癌的一般信息以及常规治疗。此外，提问者希望核实自己医生提供的信息（122个，占6%）、诊断结果（267个，占14%）和预后情况（204个，占11%）。
肺癌患者及其护理人员在互动网站板块提出的问题最多。最常请求提供的信息是更详细的信息。这些信息包括肺癌的具体信息（常规治疗、诊断和疾病症状）、对医生所说内容的核实、诊断结果和预后情况。大多数请求提供的信息本可从主治专家处获得，这表明目前向肺癌患者及其护理人员提供的信息可能不足以满足他们的需求。与肺癌专家进行在线对话的进一步实施可能是一种解决办法。
