European School of Oncology, Lisbon, Portugal; Breast Unit, Champalimaud Clinical Center, Lisbon, Portugal.
Breast Cancer Network Australia, Camberwell, Australia.
Breast. 2018 Jun;39:131-138. doi: 10.1016/j.breast.2018.03.002. Epub 2018 Apr 19.
Approximately 0.5 million people worldwide die from metastatic breast cancer (mBC) every year. This manuscript provides an overview on the status of mBC in several regions of the world, highlighting the gaps in care, resources, and support available for patients with mBC. Primary research was conducted in 2015 and 2016, comprising four global qualitative and quantitative surveys of approximately 15,000 individuals in 34 countries. Secondary research was conducted using literature reviews of peer-reviewed publications, patient survey reports, and media or online articles. There have been modest improvements in mBC outcomes over the past decade. Patients are not provided with adequate information about mBC. There is a need for open discussion with patients and caregivers about realistic goals; however, physicians are not trained in communicating with patients about their disease. Maintaining patients' quality of life is a crucial goal; however, this has not improved, and in some cases, may have declined in the past decade. Public awareness and understanding of mBC is limited, with damaging consequences for patients and caregivers. Issues affecting employment remain relevant to patients with mBC and their caregivers. Globally, mBC is associated with a substantial economic burden. Relationships with caregivers are crucial to patients with mBC, and caregiver support needs are often overlooked. A strong and united global effort among healthcare professionals, including clinicians, oncologists, pharmaceutical manufacturers, payers, and policy makers, and with advocates, families, and patients, is necessary to improve the outcome and quality of life for patients with mBC.
全世界每年约有 50 万人死于转移性乳腺癌(mBC)。本文概述了世界上几个地区的 mBC 现状,重点介绍了 mBC 患者护理、资源和支持方面的差距。主要研究于 2015 年和 2016 年进行,包括对 34 个国家约 15000 人的四项全球定性和定量调查。辅助研究使用了同行评议出版物、患者调查报告以及媒体或在线文章的文献综述。在过去的十年中,mBC 的治疗结果略有改善。但患者并未获得关于 mBC 的充分信息。需要与患者和护理人员就现实目标进行公开讨论,但医生并未接受过关于如何与患者讨论疾病的培训。维持患者的生活质量是一个关键目标,但这并没有得到改善,在某些情况下,过去十年中可能有所下降。公众对 mBC 的认识和理解有限,这对患者和护理人员都有严重的影响。影响就业的问题仍然与 mBC 患者及其护理人员有关。在全球范围内,mBC 给患者带来了沉重的经济负担。与护理人员的关系对 mBC 患者至关重要,但护理人员的支持需求经常被忽视。医疗保健专业人员(包括临床医生、肿瘤学家、制药制造商、支付者和政策制定者)以及倡导者、家庭和患者之间需要进行强有力的、全球性的合作,以改善 mBC 患者的治疗结果和生活质量。
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