Rudolph Ivonne, Seilacher Eckart, Köster Marie-Jolin, Stellamanns Jan, Liebl Patrick, Zell Jörg, Ludwig Svenja, Beck Volker, Hübner Jutta
Deutsche Krebsgesellschaft, Berlin.
Interaktiv GmbH - Creative Information Solutions, Hürth.
Dtsch Med Wochenschr. 2015 Mar;140(5):e43-7. doi: 10.1055/s-0041-100585. Epub 2015 Mar 3.
Cancer patients generally have a great need for disease-related information. They prefer to be informed personally by the attending doctor. Yet, they also use other sources, mostly from medical laypersons or public media. The goal of our survey was to obtain insight into information patients get and their requirements regarding information.
Using a standardized questionnaire, we conducted a survey on 226 patients and 32 relatives, who attended meetings providing information for cancer patients.
Patients were generally content or highly content with the information they got. The direct consultation with the doctor is the most important source of information especially for older patients. Information by other patients and self-help groups rank second, followed by internet and online chats, which both are of minor importance for patients older than 60 years. From the patients' point of view, sources of information should be individualized and comprehensive, provided by experts and allowing for questions. Patients prefer one constant person for communication. Remarkably, empathic communication was not rated as important. Age and gender are not associated with these preferences for these characteristics of sources of information.
Patients' and relatives' desire for an individualized, comprehensive counseling with high expertise provided by one person points to the limits of resources of the health system. The importance of additional information material will rise accordingly. This material should be tailored to the needs of diverse patient groups.
癌症患者通常对疾病相关信息有很大需求。他们更希望由主治医生亲自告知。然而，他们也会利用其他来源，大多来自非医学专业人士或大众媒体。我们此次调查的目的是深入了解患者获取的信息以及他们对信息的需求。
我们使用标准化问卷，对226名患者和32名亲属进行了调查，这些患者和亲属参加了为癌症患者提供信息的会议。
患者总体上对所获得的信息感到满意或非常满意。与医生的直接咨询是最重要的信息来源，尤其是对老年患者而言。其他患者和自助团体提供的信息位居第二，其次是互联网和在线聊天，这两者对60岁以上的患者来说重要性较低。从患者的角度来看，信息来源应该个性化且全面，由专家提供并允许提问。患者更喜欢由同一个人进行沟通。值得注意的是，共情沟通并未被认为很重要。年龄和性别与对这些信息来源特征的偏好无关。
患者和亲属希望由一人提供具有高专业性的个性化、全面咨询服务这一需求，凸显了卫生系统资源的局限性。相应地，额外信息材料的重要性将会提高。这种材料应该根据不同患者群体的需求进行定制。
