Hirschmann J, Zimmermann C W
Neurologische Universitätsklinik Tübingen.
Fortschr Neurol Psychiatr. 1987 Sep;55(9):263-72. doi: 10.1055/s-2007-1001828.
MS patient members of the German Multiple Sclerosis Society were asked about their opinions concerning time and circumstances of getting to know the diagnosis, based on their personal experiences. Citations from 126 answers to a questionnaire, which had been published in the newsletter of the society, are presented to illustrate typical statements. Two thirds of the patients insisted on being informed about the diagnosis as early and as extensively as possible. One third, however, was more reluctant and stated that extensive information about the diagnosis should be timed individually depending on expected development of the disease and disabilities. Information should be extensive, constructive, and tailored to the individual needs of each patient so that he could deal more effectively with his disease. Most contributions voiced severe criticism as to the practice of information experienced. The study was initiated to prepare a more systematic approach to a field which has not been investigated to a degree matching its importance and impact in everyday neurological practice.
德国多发性硬化症协会的多发性硬化症患者成员被问及基于他们的个人经历，对于了解诊断的时间和情况的看法。本文呈现了从该协会时事通讯中发布的一份问卷的126份回答中引用的内容，以说明典型的陈述。三分之二的患者坚持要尽早且尽可能全面地被告知诊断结果。然而，三分之一的患者则更为犹豫，称关于诊断的详细信息应根据疾病和残疾的预期发展情况因人而异。信息应该详尽、有建设性，并根据每位患者的个人需求进行定制，以便他们能更有效地应对自己的疾病。大多数反馈对所经历的信息告知做法提出了严厉批评。开展这项研究是为了针对一个在日常神经科实践中重要性和影响力与其研究程度不匹配的领域，准备一种更系统的方法。
