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

患有转移性癌症的西班牙裔/拉丁裔患者的患者激活和姑息治疗

• 批准号: 10191855
• 负责人: Patricia Ingrid Moreno
• 金额: $ 17万
• 依托单位: UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10191855
• 关键词: Admission activity; Advance Directives; American Society of Clinical Oncology; Attitude; Belief; Biological Models; Cancer Patient; Caring; Client satisfaction; Clinical Trials; Communication; Comprehensive Cancer Center; Development; Diagnosis; Discrimination; Disease; Disseminated Malignant Neoplasm; Documentation; Enrollment; Ethnic Origin; Family; Focus Groups; Future; Goals; Health system; Healthcare Systems; Hispanics; Hospitals; Intervention; Language; Latino; Learning; Methodology; Methods; Modeling; Monitor; Not Hispanic or Latino; Oncology; Online Systems; Outcome; Palliative Care; Participant; Patient-Centered Care; Patients; Phase; Physicians; Positioning Attribute; Process; Provider; Race; Randomized Controlled Trials; Readiness; Research; Resources; Socioeconomic Status; Standardization; Structure; Symptoms; System; Testing; Training; Trust; Universities; aggressive therapy; base; care providers; design; effectiveness implementation study; empowered; end of life; experience; health literacy; health related quality of life; hospice environment; improved; improved outcome; information gathering; innovation; intervention effect; novel; patient population; patient-clinician communication; psychoeducational; recruit; reduce symptoms; satisfaction; shared decision making; skills; standard of care; symptom management; therapy development; usability

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.

强有力的证据表明，转移者癌的姑息治疗早期整合姑息治疗会改善 通过减轻症状负担并提高与健康相关的质量，在整个疾病过程中的成果 生活（HRQOL）和对早期姑息治疗的满意度也会增加临终关怀和减少 生命尽头的侵略性疗法和ICU的录取。 现在，与转移性癌症患者的疾病改良治疗同时进行了 但是，美国临床肿瘤学会和国家综合癌症中心网络 患者仍在疾病连续性，或接近萨默里夫的疾病连续性中仍在上差异护理 差异持续使用姑息治疗。 接受姑息治疗，比西班牙裔/拉丁裔白人患者更糟糕的HRSE HRQOL和症状负担。 西班牙裔/拉丁美洲人也更有可能对患者激活具有重要意义，包括低 健康素养，语言障碍以及结构性和感知的歧视。 有效激活患者和家庭，因此他们有能力在谈话中 姑息治疗和以前没有研究对西班牙裔/拉丁裔的患者激活干预措施与 转移性癌症。 西班牙裔/拉丁裔转移性癌症患者的激活，b） 干预措施增加患者的激活并促进姑息治疗的早期整合。 创新方法嵌入了我们的医疗保健系统，并结合了EHR融合 系统的症状监测。 患者的症状特征，并帮助患者和提供者中心对患者的姑息治疗讨论” 独特的护理需求。 护理，我们将使用基于Web的平台提供 关于姑息治疗的信息（根据症状概况个性化）和患者激活 技巧。混合方法研究的目的是：目标1） 通过患者和提供者的焦点组早期整合姑息治疗（n = 20）； 个性化的，具有文化适应的患者激活国际和连接患者使用USBISIS测试（n = 10） 目标3）评估我们干预结果在姑息治疗的早期阶段的影响 介绍和推荐，包括HRQOL，患者提供沟通，共享决策和 关于姑息治疗的信念/态度（n = 50）。 有关姑息治疗的对话中的患者，并开发了一种新颖的行进干预干预措施 在未来的全尺度随机对照试验中进行了测试。