Department of Medical Psychology and Neuropsychology, Tilburg University, The Netherlands.
Patient Educ Couns. 2012 Sep;88(3):427-35. doi: 10.1016/j.pec.2012.05.002. Epub 2012 Jun 1.
To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics.
All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25.
Seventy-seven percent responded (n=742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt.
Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient.
More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.
评估子宫内膜癌幸存者对所获得信息的感知程度和满意度，并确定与社会人口统计学和临床特征的关联。
所有在 1998 年至 2007 年间被诊断为子宫内膜癌的患者，在艾恩德霍芬癌症登记处注册，都收到了一份包括 EORTC-QLQ-INFO25 的问卷。
77%的患者（n=742）做出了回应。大多数患者表示他们获得了相当多的关于疾病和医学检查的信息。然而，大多数患者（54%）或只有一点点（24%）被告知疾病的病因和可能的副作用（36%；27%）。特别是关于额外帮助、康复、心理援助和预期的社会和性生活结果的信息不足。5%的患者表示对收到的信息不满意或只有一点点满意。4%的患者认为这些信息没有帮助或只有一点点帮助。15%的患者希望获得更多信息。年龄较小、最近诊断、放疗、无合并症、有伴侣、收到书面信息和较高的教育水平与更高的感知信息接受程度相关。
许多子宫内膜癌幸存者对所获得的信息不满意。一些信息提供领域被认为是不足的。
为了提供最佳信息，可能需要更多针对患者的信息。实施生存护理计划可能是实现这一目标的一种方式。
