Klinik für Innere Medizin II, Universitätsklinikum Jena, Am Klinikum 1, 07747, Jena, Germany.
Krebszentrum Nord, CCC, Universitätsklinikum Schleswig-Holstein, Campus Kiel, Arnold-Heller-Straße 3, Haus 14, 24105, Kiel, Germany.
J Cancer Educ. 2020 Apr;35(2):403-411. doi: 10.1007/s13187-019-1480-7.
To learn more about information needs and satisfaction with provided information among cancer patients and whether dissatisfaction with information has any association with how therapy decisions are made. An online survey was conducted during March 2015 and January 2016 by the German non-profit patient organization "Das Lebenshaus e.V." among their members with rare solid tumors. A total of 338 records was analyzed. The majority found information on their disease important and was satisfied with the provided information. The participants were less satisfied with the information concerning management of side effects than with other aspects of information (p < .001). Support groups, lectures, and the oncologist were rated as the most helpful sources of information followed by a second opinion and media. Participants who were dissatisfied with the information more often made the decision on the treatment alone by themselves (p < .001). Our results show a high satisfaction with disease-related information among our study participants. Improvements could be made by offering more information on the management of side effects and by giving more information about support groups, reliable websites, and other helpful media.
了解癌症患者的信息需求和对所提供信息的满意度，以及对信息的不满是否与治疗决策的制定有关。德国非营利性患者组织“Das Lebenshaus e.V.”于 2015 年 3 月至 2016 年 1 月期间，通过其成员对患有罕见实体肿瘤的患者进行了一项在线调查。共分析了 338 份记录。大多数患者认为他们的疾病信息很重要，并对所提供的信息感到满意。与其他信息方面相比，患者对副作用管理方面的信息不满意（p <.001）。支持小组、讲座和肿瘤医生被评为最有帮助的信息来源，其次是第二意见和媒体。对信息不满意的参与者更倾向于独自做出治疗决策（p <.001）。我们的研究结果表明，研究参与者对疾病相关信息的满意度较高。可以通过提供更多关于副作用管理的信息，以及提供更多关于支持小组、可靠网站和其他有用媒体的信息来改善这种情况。
