PDF(Pubmed)
Abstract：
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
目的：虽然转移性乳腺癌（MBC）治疗的重大进展延长了生存期并改善了预后，在提供以患者为中心的支持性治疗方面仍存在巨大差距.由于无法治愈的性质和疾病的终生持续时间，转移性癌症的特定护理服务需求与早期癌症不同。这项研究的目的是评估患有MBC的患者如何重新想象癌症护理服务。
方法：这项定性研究是与患者领导的组织合作进行的，指导研究人员和科学伙伴关系（GRASP）和项目生命倡导者，非营利组织，由MBC患者为MBC患者建立的在线健康社区。虚拟半结构化访谈（n=36）是对ProjectLife成员进行的，有目的地从小组的整体成员中采样。访谈指南包含围绕MBC患者的生活经历的项目，与护理相关的最大未满足的需求，以及虚拟健康社区参与的观点。使用两阶段演绎和归纳分析对访谈进行编码。
结果：确定了重新构想癌症护理服务的三个主要主题，包括整体护理，信息需求,和概念转变。在这几个子主题中，患者重新想象转诊到非肿瘤服务，护理人员支持,接受综合医学，简化的临床试验注册，策划了优质的患者资源，MBC特定的术语和方法，长期生活和护理目标规划，和以病人为中心的声音。
结论：患有转移性癌症的患者有特定的支持治疗需求。这些发现突出了患者驱动的重新想象领域，这对于MBC患者而言最为突出。
方法：这项定性研究是与患者领导的组织合作进行的，指导研究人员和科学伙伴关系（GRASP）和项目生命倡导者，非营利组织，由MBC患者为MBC患者建立的在线健康社区。虚拟半结构化访谈（n=36）是对ProjectLife成员进行的，有目的地从小组的整体成员中采样。访谈指南包含围绕MBC患者的生活经历的项目，与护理相关的最大未满足的需求，以及虚拟健康社区参与的观点。使用两阶段演绎和归纳分析对访谈进行编码。
结果：确定了重新构想癌症护理服务的三个主要主题，包括整体护理，信息需求,和概念转变。在这几个子主题中，患者重新想象转诊到非肿瘤服务，护理人员支持,接受综合医学，简化的临床试验注册，策划了优质的患者资源，MBC特定的术语和方法，长期生活和护理目标规划，和以病人为中心的声音。
结论：患有转移性癌症的患者有特定的支持治疗需求。这些发现突出了患者驱动的重新想象领域，这对于MBC患者而言最为突出。
