Patient Activation and Palliative Care among Hispanics/Latinos with Metastatic Cancer

强有力的证据表明，转移性癌症患者早期整合姑息治疗的效果有所改善 通过减少症状负担和提高与健康相关的质量，在整个疾病过程中的结果 生活质量(HRQOL)和护理满意度。早期姑息治疗也增加了临终关怀的登记人数，并减少了 生命末期的急诊和重症监护室的积极治疗和入院。姑息治疗的早期整合 与疾病修正治疗同时进行的转移性癌症患者现在被 美国临床肿瘤学会和国家综合癌症中心网络。然而，大多数 患者仍然只接受疾病晚期、生命末期或接近生命末期的姑息治疗，而且意义重大 在获得姑息治疗方面，差距依然存在。患有转移性癌症的西班牙裔/拉丁裔患者不太可能 接受姑息治疗，与非西班牙裔/拉美裔白人患者相比，他们的HRQOL和症状负担更差。 拉美裔/拉丁裔也更有可能经历患者激活方面的重大挑战，包括Low 健康素养、语言障碍以及结构性和可感知的歧视。人们对如何处理这些问题知之甚少 有效地激活患者和家属，使他们成为对话的参与者 姑息治疗，之前没有研究开发出针对西班牙裔/拉丁裔的患者激活干预措施 转移性癌。本提案的首要目标是：a)确定患者面临的障碍和促进者 西班牙裔/拉丁裔转移性癌症患者的激活；以及；b)发展一种个性化的、文化适应的 增加患者活跃度并促进姑息治疗早期整合的干预措施。我们将使用 创新的方法，将我们的干预嵌入到医疗保健系统中，并整合了EHR集成 系统的症状监测。此方法允许我们根据以下条件定制患者激活干预 患者的症状描述，并帮助患者和提供者将姑息治疗的讨论集中在患者的 独特的护理需求。为了增加患者对姑息治疗对话的准备和参与度 关怀，我们将使用一个基于网络的平台来提供心理教育资源，提供可访问的，容易- 了解有关姑息治疗(根据症状特征进行个性化)和患者激活的信息 小费。这项混合方法研究的目的是：1)确定患者激活的障碍和促进者， 通过患者和提供者焦点小组(N=20)早期整合姑息治疗；目标2)创建 个性化、适应文化的患者激活干预并进行患者可用性测试(N=10)；以及 目的3)评估我们的干预措施对姑息治疗早期阶段近期结果的影响 介绍和转介，包括HRQOL、患者与提供者沟通、共享决策和 关于姑息治疗的信念/态度(N=50)。这项研究的影响将是赋予西班牙裔/拉丁裔 患者关于姑息治疗的对话，并开发一种新的患者激活干预措施，可以 在未来的全面随机对照试验中进行测试。

Robust evidence demonstrates that early integration of palliative care in patients with metastatic cancer improves outcomes throughout the disease course by reducing symptom burden and increasing health-related quality of life (HRQoL) and satisfaction with care. Early palliative care also increases hospice enrollment and reduces aggressive treatments and admissions to the ED and ICU at the end of life. Early integration of palliative care concurrently with disease-modifying treatments in patients with metastatic cancer is now recommended by the American Society of Clinical Oncology and National Comprehensive Cancer Center Network. However, most patients still only receive palliative care late in the disease continuum, at or near end of life, and significant disparities persist in access to palliative care. Hispanic/Latino patients with metastatic cancer are less likely to receive palliative care and have worse HRQoL and symptom burden than non-Hispanic/Latino White patients. Hispanics/Latinos also are more likely to experience significant challenges to patient activation, including low health literacy, language barriers, and structural and perceived discrimination. Little is known about how to effectively activate patients and families so that they are empowered participants in conversations about palliative care and no previous study has developed a patient activation intervention for Hispanics/Latinos with metastatic cancer. The overarching goal of this proposal is to: a) identify barriers and facilitators to patient activation in Hispanic/Latino patients with metastatic cancer, and; b) develop an individualized, culturally-adapted intervention that increases patient activation and facilitates early integration of palliative care. We will use an innovative approach that embeds our intervention within the healthcare system and incorporates EHR-integrated systematic symptom monitoring. This approach allows us to tailor our patient activation intervention based on patients’ symptom profile and to help patients and providers center discussions of palliative care on patients’ unique care needs. In order to increase patients’ preparedness and engagement in conversations about palliative care, we will use a web-based platform to deliver a psychoeducational resource that provides accessible, easy- to-understand information about palliative care (individualized based on symptom profile) and patient activation tips. The aims of this mixed-methods study are: Aim 1) identify barriers and facilitators to patient activation and early integration of palliative care through patient and provider focus groups (N=20 each); Aim 2) create an individualized, culturally-adapted patient activation intervention and conduct patient usability testing (N=10); and Aim 3) evaluate the effect of our intervention on proximal outcomes in the early phases of palliative care introduction and referral, including HRQoL, patient-provider communication, shared decision-making, and beliefs/attitudes regarding palliative care (N=50). The impact of this study will be to empower Hispanic/Latino patients in conversations about palliative care and to develop a novel patient activation intervention that can be tested in a future, full-scale randomized controlled trial.