EL-CENTRO: Engaging Latinos in the Center of Cancer Treatment Options

EL-CENTRO：让拉丁裔参与癌症治疗选择中心

• 批准号: 9355121
• 负责人: ANA CRISTINA TERRA DE SOUZA LINDSAY
• 金额: $ 10.06万
• 依托单位: UNIVERSITY OF MASSACHUSETTS BOSTON
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/9355121
• 关键词: Advance Care Planning; Advanced Malignant Neoplasm; Advocate; Attention; Benefits and Risks; Boston; Cancer Center; Cancer Patient; Caregivers; Cessation of life; Chemotherapy-Oncologic Procedure; Clip; Cognitive; Collaborations; Colorectal Cancer; Communication; Communities; Consent Forms; Dana-Farber Cancer Institute; Decision Making; Disease; Disseminated Malignant Neoplasm; Educational Materials; Ensure; Equilibrium; Face; Failure; Focus Groups; Fostering; Funding; Hispanics; Hospitals; Individual; Inequality; Informed Consent; Institution; Intervention; Interview; Language; Latino; Linguistics; Malignant Neoplasms; Malignant neoplasm of gastrointestinal tract; Malignant neoplasm of pancreas; Massachusetts; Minority; Oncologist; Pamphlets; Patient Education; Patients; Pharmaceutical Preparations; Phase; Physicians; Population; Process; Qualitative Research; Quality of Care; Recruitment Activity; Regimen; Reporting; Research; Research Infrastructure; Research Methodology; Research Personnel; Resources; Risk; Students; Testing; Universities; Voice; Work; cancer care; cancer health disparity; cancer therapy; chemotherapy; end of life; end of life care; expectation; experience; health disparity; hospice environment; improved; next generation; outcome forecast; palliative chemotherapy; patient oriented; programs; racial and ethnic disparities; randomized trial; response; satisfaction; skills; tool; treatment center; treatment choice

Summary: The objective of the study is to improve the quality of advanced cancer care and treatment decision-making for Latinos by developing a tailored video intervention to better inform patients about their illness, prognosis, and chemotherapy risks/benefits. Latinos with incurable cancer harbor markedly optimistic expectations of prognosis, and often receive palliative chemotherapy without understanding that it is unlikely to cure. Such misconceptions are much more prevalent among Latinos than Whites, and may contribute to Latino/non-Latino disparities in end-of-life (EOL) care such as lower rates of advance care planning, underutilization of hospice and greater intensity of EOL care. Latino advanced cancer patients face formidable cultural, linguistic, and structural barriers to accessing critical information about their disease and treatment options. Nevertheless, interventions to enhance Latinos' understanding are few and underdeveloped. Prior to starting treatment, oncologists typically discuss the risks and benefits of chemotherapy, and patients sign written informed consent. This proposal capitalizes on the chemotherapy informed consent (IC) process as a strategic opportunity to equip Latinos with a better understanding of their illness and treatment options. In prior work, Drs. Schrag and Enzinger (DF/HCC) developed a suite of videos and booklets to support IC for common chemotherapy regimens used to treat advanced GI cancers, which balance attention to risks and benefits, offer context about the underlying cancer, and include patient voices. Leveraging Dr. Lindsay's (UMass Boston) skills in Latino community engagement, mixed methods research, and Latino health disparities, the team will adapt the videos to attend to the needs of Latinos-both Spanish and English speakers. In Aim 1) the study team will use a four-phase qualitative research process to ensure that IC tools meet the informational, cultural, and linguistic needs of Latinos with advanced GI cancer. In Aims 2 & 3) the resulting Spanish-English suite of IC tools will be tested to determine its effect on Latino patients' and caregivers' decision-making about cancer treatment and EOL care, and their satisfaction with communication processes and cancer care. This will be accomplished through a multicenter randomized trial involving 116 Latinos with advanced GI cancers and their caregivers, recruited from seven academic and community cancer centers serving diverse Latino populations. This intervention is practical, scalable and has immense potential to impact the quality of cancer care provided to Latinos. This project aligns with the U54 Partnership as it aims to reduce cancer disparities by improving communication with Latinos. The project prioritizes involvement of Latino students to foster the next generation of URM researchers and more fully harmonize the research with the needs and perspectives of the broader Latino community. Finally, this project forges and solidifies relationships with Latino communities, and harnesses the complementary expertise of its DF/HCC and UMass Boston investigators, thereby laying the groundwork for a sustainable partnership for cross-cutting cancer disparities research.

摘要：该研究的目的是提高晚期癌症护理和治疗的质量 通过开发量身定制的视频干预措施，更好地告知患者他们的情况，帮助拉丁裔做出决策 疾病、预后和化疗风险/益处。患有无法治愈的癌症的拉丁裔人表现出明显的乐观态度 对预后的预​​期，并且经常接受姑息性化疗，但不知道这不太可能 治愈。这种误解在拉丁裔中比白人中更为普遍，并且可能会导致 拉丁裔/非拉丁裔在临终 (EOL) 护理方面的差异，例如预先护理计划率较低、 临终关怀服务的利用不足和 EOL 护理的强度加大。拉丁裔晚期癌症患者面临着严峻的挑战 获取有关疾病和治疗的重要信息的文化、语言和结构障碍 选项。然而，增强拉丁美洲人理解的干预措施很少且不发达。之前 开始治疗时，肿瘤科医生通常会讨论化疗的风险和益处，并且患者会签署 书面知情同意书。该提案利用化疗知情同意 (IC) 流程作为 使拉丁美洲人更好地了解自己的疾病和治疗选择的战略机会。在之前的 工作，博士。 Schrag 和 Enzinger (DF/HCC) 开发了一套视频和小册子来支持 IC 用于治疗晚期胃肠道癌症的化疗方案平衡了对风险和益处的关注，提供了 有关潜在癌症的背景信息，并包括患者的声音。利用 Lindsay 博士（麻省大学波士顿分校） 拉丁裔社区参与、混合方法研究和拉丁裔健康差异方面的技能，该团队将 调整视频以满足拉丁裔（西班牙语和英语使用者）的需求。目标 1) 研究 团队将使用四阶段定性研究流程来确保 IC 工具满足信息、文化、 以及患有晚期胃肠道癌症的拉丁裔的语言需求。在目标 2 和 3）中，由此产生的西班牙语-英语套件 IC 工具将进行测试，以确定其对拉丁裔患者和护理人员癌症决策的影响 治疗和 EOL 护理，以及他们对沟通过程和癌症护理的满意度。这将是 这是通过一项多中心随机试验完成的，该试验涉及 116 名患有晚期胃肠道癌症的拉丁裔及其患者 护理人员从七个学术和社区癌症中心招募，为不同的拉丁裔人群提供服务。 这种干预措施实用、可扩展，并且具有影响癌症护理质量的巨大潜力 拉丁裔。该项目与 U54 合作伙伴关系保持一致，旨在通过改善癌症差异来减少癌症差异 与拉丁裔的沟通。该项目优先考虑拉丁裔学生的参与，以培养下一代 URM 研究人员的研究，并更充分地协调研究与更广泛的需求和观点 拉丁裔社区。最后，该项目建立并巩固了与拉丁裔社区的关系，并且 利用 DF/HCC 和麻省大学波士顿分校研究人员的互补专业知识，从而奠定了 为跨领域癌症差异研究的可持续伙伴关系奠定基础。