Integrating Palliative Care into Self-Management of Breast Cancer

项目总结/摘要 尽管姑息治疗服务的扩散和迅速增长的证据表明，姑息治疗增加 由于生命质量和寿命的问题，患者仍然不了解其性质和益处。姑息治疗是专门的 为患有进行性晚期疾病的患者提供医疗护理，以缓解疼痛，症状和 严重疾病的压力。本研究的目的是测试一种心理教育干预， 提高患者对姑息治疗的认识，并促进其及时融入自我管理（SM） 她们的乳腺癌我们的具体目标是：1）评估干预对乳腺癌的影响 了解病人对姑息治疗的认知程度; 2）探讨介入对病人情绪的初步影响 （自我效能，焦虑，抑郁，不确定性）和行为（护理对话的目标，SM中的角色， 沟通技巧，过渡管理，卫生保健利用）;和3）评估的可行性和 拟议方案的可接受性。一个探索性的目的是调查人口统计学在多大程度上 和临床因素缓和干预的影响，重点是使用和结果的差异 少数参与者。我们的初步工作表明，干预是有效的改善 转移性乳腺癌患者的姑息治疗知识和SM。这些数据提供 在R 01机制下进行大规模随机对照试验的预期中进行试点随机对照试验的有力证据。的 干预，管理癌症护理：个人指南（MCC），包括七个印刷模块：管理 您的症状;管理您的护理和设定目标;护理选项;与您的医疗保健人员交谈 提供者;与家人和朋友交谈;管理过渡;在过渡期间自信地行事 不确定性这些模块教授日常SM活动，有助于保持健康和生活质量， 身体、心理和社会脆弱性的存在。使用杂志格式，这些模块包括 有关每个主题的关键信息、会话和其他个性化内容的方法、“对话 启动者”，以促进与家庭照顾者和提供者的沟通，并与当地和 互联网资源，以及其他功能。MCC将在I-IV期乳腺癌患者中进行测试， 基线、入组后1个月和3个月。干预组将收到MCC， 注意力控制组将收到症状管理手册。这项创新的研究可以帮助 将姑息治疗作为针对严重、进展性疾病的SM干预措施的支柱。的 干预进一步推进NINR战略计划，通过提供实用的 信息、工具和交流战略，以减轻身心负担， 了解和自信的SM的复杂问题的基础护理选项。

PROJECT SUMMARY/ABSTRACT Despite a proliferation of palliative care services and rapidly growing evidence that palliative care increases quality and length of life, patients remain uninformed about its nature and benefits. Palliative care is specialized medical care for patients with progressive, advanced disease that offers relief from the pain, symptoms and stress of serious illness. The purpose of this study is to test a psycho-educational intervention intended to improve patients' knowledge of palliative care and to facilitate its timely integration into self-management (SM) of their breast cancer. Our specific aims are: 1) to evaluate the effects of the intervention on breast cancer patients' knowledge of palliative care; 2) to examine preliminary effects of the intervention on patients' feelings (self-efficacy, anxiety, depression, uncertainty), and behaviors (goals of care conversations, role in SM, communication skills, management of transitions, health care utilization); and 3) to evaluate the feasibility and acceptability of the proposed protocol. An exploratory aim is to investigate the extent to which demographic and clinical factors moderate the effects of the intervention, with emphasis on differences in use and outcomes among minority participants. Our preliminary work has shown the intervention to be efficacious in improving both knowledge of palliative care and SM among patients with metastatic breast cancer. These data provide strong evidence for conducting a pilot RCT in anticipation of a large RCT under an R01 mechanism. The intervention, Managing Cancer Care: A Personal Guide (MCC), consists of seven printed modules: Managing Your Symptoms; Managing Your Care and Setting Goals; Care Options; Talking With Your Health Care Providers; Talking With Your Family and Friends; Managing Transitions; and Acting Confidently During Uncertainty. The modules teach daily SM activities that help to maintain health and quality of life in the presence of physical, psychological and social vulnerabilities. Using a magazine format, the modules include key information about each topic, worksheets and other means of personalizing content, "conversation starters" to facilitate communication with family caregivers and providers, and targeted links to local and internet resources, among other features. The MCC will be tested with patients with Stage I-IV breast cancer at baseline, one, and three months following enrollment. The intervention group will receive the MCC, and the attention-control group will receive a symptom management booklet. This innovative research can help to establish palliative care as a mainstay of SM interventions that target serious, progressive illnesses. The intervention furthers the NINR Strategic plan to promote quality of life for patients by providing practical information, tools and communication strategies to reduce physical and psychological burden, and to enable informed and confident SM of the complex issues underlying care options.