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: 10686057
• 负责人: Patricia Ingrid Moreno
• 金额: $ 16.5万
• 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/10686057
• 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; Confusion; Development; Diagnosis; Disease; Disparity; Disseminated Malignant Neoplasm; Documentation; Enrollment; Ethnic Origin; Family; Focus Groups; Future; Goals; Health system; Healthcare Systems; Hispanic; Hispanic Populations; Hospitals; Intervention; Language; Latino; Latino Population; Learning; Methodology; Methods; Modeling; Monitor; Not Hispanic or Latino; Oncology; Outcome; Palliative Care; Participant; Patient Care; Patient-Centered Care; Patients; Phase; Physicians; Positioning Attribute; Process; Provider; Race; Randomized, Controlled Trials; Readiness; Recommendation; Research; Resources; Socioeconomic Status; Standardization; Symptoms; System; Testing; Training; Trust; Universities; aggressive therapy; care providers; design; effectiveness-implementation RCT; effectiveness/implementation hybrid; empowerment; end of life; experience; health related quality of life; hospice environment; improved; improved outcome; information gathering; innovation; intervention effect; low health literacy; novel; patient population; patient-clinician communication; perceived discrimination; psychoeducation; psychoeducational; recruit; reduce symptoms; satisfaction; shared decision making; skills; standard of care; symptom management; therapy development; usability; web platform

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，转移性癌症患者的姑息治疗的早期整合可以改善 通过减少症状负担和提高与健康相关的质量， 生活（HRQoL）和护理满意度。早期姑息治疗也增加了临终关怀的入学率， 积极的治疗和在生命结束时进入艾德和ICU。姑息治疗的早期整合 与疾病修饰治疗同时在转移性癌症患者中， 美国临床肿瘤学会和国家综合癌症中心网络。但大多数 患者仍然只在疾病连续体的后期，在或接近生命结束时接受姑息治疗， 在获得姑息治疗方面仍然存在差距。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，HRQoL和症状负担比非西班牙裔/拉丁裔白色患者更差。 西班牙裔/拉丁裔也更有可能遇到患者激活的重大挑战，包括低 健康素养、语言障碍以及结构性和感知歧视。我们对如何 有效地激活患者和家属，使他们能够参与有关 姑息治疗，之前没有研究为西班牙裔/拉丁裔患者开发了患者激活干预， 转移性癌症该提案的总体目标是：a）确定患者的障碍和促进因素 B）开发个体化的、文化适应性的， 增加患者激活并促进姑息治疗早期整合的干预。我们将使用 创新的方法，将我们的干预嵌入医疗保健系统，并结合EHR集成 系统的症状监测。这种方法使我们能够根据以下因素定制患者激活干预： 患者的症状概况，并帮助患者和提供者将姑息治疗的讨论集中在患者的症状上 独特的护理需求。为了增加患者的准备和参与有关姑息治疗的对话， 护理，我们将使用一个基于网络的平台，提供心理教育资源，提供可访问的，容易- 了解姑息治疗（基于症状特征进行个性化）和患者激活的相关信息 提示.这项混合方法研究的目的是：目的1）识别患者激活的障碍和促进因素， 通过患者和提供者焦点小组（各N=20）早期整合姑息治疗;目标2）创建一个 个性化、文化适应性患者激活干预，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近端结局的影响 介绍和转诊，包括HRQoL、患者-提供者沟通、共同决策，以及 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 患者在关于姑息治疗的对话，并制定一种新的患者激活干预，可以 在未来的全面随机对照试验中进行测试。

项目成果

Coping strategies and psychosocial resources among women living with metastatic breast cancer: A qualitative study.

转移性乳腺癌女性的应对策略和社会心理资源：一项定性研究。

• DOI: 10.1080/07347332.2023.2254754
• 发表时间: 2023
• 期刊: Journal of psychosocial oncology
• 影响因子: 2.1
• 作者: NoriegaEsquives,BlancaS;Walsh,EmilyA;Penedo,FrankJ;Thomas,JessicaL;Horner,FionaS;Torzewski,JoannaB;Gradishar,WilliamJ;Victorson,DavidE;Moreno,PatriciaI
• 通讯作者: Moreno,PatriciaI

Effects of a randomized-controlled trial of cognitive behavioral stress management: Psychosocial adaptation and immune status in men with early-stage prostate cancer.

• DOI: 10.1016/j.genhosppsych.2022.10.012
• 发表时间: 2022-11
• 期刊: GENERAL HOSPITAL PSYCHIATRY
• 影响因子: 7
• 作者: Walsh, Emily A.;Antoni, Michael H.;Popok, Paula J.;Moreno, Patricia I.;Penedo, Frank J.
• 通讯作者: Penedo, Frank J.

EHR-Integrated Patient-Reported Outcomes in Ambulatory Oncology: A Critical Opportunity for Timely and Targeted Palliative Care.

• DOI: 10.6004/jnccn.2022.7079
• 发表时间: 2023-01
• 期刊: Journal of the National Comprehensive Cancer Network : JNCCN
• 作者: Moreno PI;Penedo FJ;Knaul FM;Oltmann C;Huber MT;Khawand-Azoulai M
• 通讯作者: Khawand-Azoulai M