Departamento de Tumores Mamarios e Investigacion, Instituto Nacional de Cancerologia, Mexico City, Mexico.
Centro de Cancer de Mama, Hospital Zambrano Hellion, Tecnologico de Monterrey, Monterrey, Nuevo Leon, Mexico.
Cancer Control. 2020 Jan-Dec;27(1):1073274820920637. doi: 10.1177/1073274820920637.
There is paucity of data regarding the knowledge and understanding of patients with metastatic breast cancer (MBC) about their disease stage and treatment goals. This study assessed these patients' awareness of MBC incurability, topics reviewed with their oncologist, perceptions of having enough knowledge to participate in treatment decision-making, most helpful information source, and satisfaction with the information they received. For this purpose, 185 patients with MBC who attended follow-up medical appointments at a Mexican referral cancer center completed a survey designed by the Metastatic Breast Cancer Alliance. Clinical data were obtained from medical records. Descriptive statistics were applied, and associations between qualitative and quantitative variables were assessed with χ and Mann-Whitney tests, respectively. Half (52%) of the patients were aware that their disease was incurable, while 31% were not sure, and 17% thought it was curable. Forty percent found it difficult to talk about treatments because they did not understand the options that were available to them. The medical staff was the most helpful information source for 74% of participants, and 64% scored their satisfaction with information ≥9 of 10. A significant association was found between higher satisfaction and knowing that MBC is incurable, as well as being older than 40 years. These results illustrate the significant lack of understanding patients with MBC have regarding their cancer, even when reporting high satisfaction with the provided information, and identify a critical need for improved patient education to enhance their comprehension and promote their participation in decision-making processes, treatment adherence, and, ultimately, outcomes.
关于转移性乳腺癌（MBC）患者对其疾病阶段和治疗目标的了解和认知，相关数据非常有限。本研究评估了这些患者对 MBC 不可治愈性的认识、与肿瘤医生讨论的主题、对自己有足够知识参与治疗决策的看法、最有帮助的信息来源以及对所获得信息的满意度。为此，185 名在墨西哥转诊癌症中心接受随访医疗预约的 MBC 患者完成了由转移性乳腺癌联盟设计的调查。临床数据来自病历。应用描述性统计，通过 χ 和曼-惠特尼检验分别评估定性和定量变量之间的关联。一半（52%）的患者知道他们的疾病是不可治愈的，而 31%的患者不确定，17%的患者认为是可以治愈的。40%的患者发现很难谈论治疗方法，因为他们不了解可供选择的方案。74%的参与者认为医务人员是最有帮助的信息来源，64%的人对信息的满意度评分≥10 分中的 9 分。较高的满意度与知道 MBC 是不可治愈的以及年龄大于 40 岁之间存在显著关联。这些结果表明，即使报告对提供的信息满意度很高，但 MBC 患者对其癌症的理解仍然存在重大差距，并确定了迫切需要改善患者教育，以提高他们的理解能力，并促进他们参与决策过程、治疗依从性，最终提高治疗效果。
