Re-imagining metastatic breast cancer care delivery: a patient-partnered qualitative study.
Re-imagining metastatic breast cancer care delivery: a patient-partnered qualitative study.
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DOI：
10.1007/s00520-023-08201-8
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发表时间：
2023-11-30
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影响因子：
--
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中科院分区：
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虽然转移性乳腺癌(MBC)治疗的显著进展延长了生存期和改善了预后，但在提供以患者为中心的支持性护理方面仍存在很大差距。转移性癌症的特殊护理需求不同于早期癌症，因为这种疾病具有不可治愈的性质和终生持续时间。这项研究的目的是评估MBC患者将如何重新想象癌症护理服务。这项定性研究是与患者主导的组织合作进行的，这些组织指导研究人员和倡导者建立科学伙伴关系(GRASP)和项目生活，这是一个由MBC患者为MBC患者创建的非营利性在线健康社区。虚拟半结构化访谈(n = 36)是对从团体总体成员中有目的地抽样的项目生活成员进行的。访谈指南包含了围绕患者对MBC的生活体验、与护理相关的最大未满足需求，以及对虚拟健康社区参与的观点。访谈采用两阶段演绎和归纳分析进行编码。确定了重新想象癌症护理提供的三个主要主题，包括整体护理、信息需求和观念转变。在这几个主题中，出现了患者重新想象转诊到非肿瘤服务、护理者支持、接受综合医学、简化临床试验登记、精选优质患者资源、特定于MBC的术语和方法、长期生活和护理目标规划以及始终以患者为中心的声音。转移性癌症患者有特定的支持性护理需求。这些发现突出了患者驱动的重新想象的领域，这对患有MBC的人来说是最突出的。
While significant progress in metastatic breast cancer (MBC) treatment has prolonged survival and improved prognosis, there remain substantial gaps in providing patient-centered supportive care. The specific care delivery needs for metastatic cancer differ from that of early-stage cancer due to the incurable nature and lifelong duration of the condition. The objective of this study was to assess how patients living with MBC would re-imagine cancer care delivery. This qualitative study was conducted in partnership with patient-led organizations Guiding Researchers and Advocates to Scientific Partnerships (GRASP) and Project Life, a nonprofit, online wellness community founded by patients with MBC for patients living with MBC. Virtual semi-structured interviews (n = 36) were conducted with Project Life members purposively sampled from the groups’ overall membership. The interview guide contained items surrounding patients’ lived experiences of MBC, greatest unmet needs related to care, and perspectives on virtual wellness community involvement. Interviews were coded using two-stage deductive and inductive analysis. Three major themes for re-imagining cancer care delivery were identified, including holistic care, information needs, and conceptual shifts. Within these several subthemes emerged with patients re-imagining referrals to non-oncological services, caregiver support, acceptance of integrative medicine, streamlined clinical trial enrollment, curated quality patient resources, MBC-specific terminology and approaches, long-term life and goal-of-care planning, and patient-centered voice throughout. People living with metastatic cancers have specific supportive care needs. These findings highlight patient-driven areas for re-imagination that are most salient for individuals with MBC.
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影响因子：
6.2
作者：
Cohen MG;Althouse AD;Arnold RM;Bulls HW;White DB;Chu E;Rosenzweig MQ;Smith KJ;Schenker Y
通讯作者：
Schenker Y
影响因子：
3.6
作者：
Poletti, Stefano;Razzini, Giorgia;Bandieri, Elena
通讯作者：
Bandieri, Elena
影响因子：
3.1
作者：
Mortensen, Gitte Lee;Madsen, Ivan Bredbjerg;Ejlertsen, Bent
通讯作者：
Ejlertsen, Bent
影响因子：
--
作者：
Kent, Erin E;deJong, Neal A;Ming, David Y
通讯作者：
Ming, David Y
影响因子：
254.7
作者：
Marinovic，Debra A.;Hunter，Rebecca L.
通讯作者：
Hunter，Rebecca L.