Video Informed Consent Tools to Improve Care for Patients With Advanced Pancreatic Cancer

视频知情同意工具可改善晚期胰腺癌患者的护理

• 批准号: 9241380
• 负责人: ANDREA C Enzinger
• 金额: $ 17.62万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-04-01 至 2021-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9241380
• 关键词: Achievement; Advance Care Planning; Advance Directives; Advanced Malignant Neoplasm; Adverse effects; Advocate; Area; Attention; Benefits and Risks; Cancer Patient; Caregivers; Caring; Cessation of life; Chemotherapy-Oncologic Procedure; Clip; Colorectal Cancer; Communication; Companions; Consent Forms; Dana-Farber Cancer Institute; Decision Making; Development Plans; Diagnosis; Disease; Disease model; Educational Materials; Environment; Equilibrium; Focus Groups; Fright; Funding; Future; Goals; Health Communication; Health Services; Holly; Individual; Informed Consent; Intensive Care; Intervention; Intervention Studies; Interview; Life; Life Expectancy; Link; Malignant Neoplasms; Malignant neoplasm of pancreas; Medical; Medical Oncologist; Mentors; Modeling; Oncologist; Outcome; Palliative Care; Pamphlets; Patient Care; Patients; Perception; Pharmaceutical Preparations; Physicians; Positioning Attribute; Process; Psychometrics; Qualitative Research; Quality of Care; Quality of life; Randomized; Regimen; Reporting; Research; Research Personnel; Research Training; Resources; Respondent; Risk; Self Care; Social Behavior; Sum; Testing; Training; Voice; Work; base; cancer care; care delivery; career; career development; chemotherapy; effective intervention; end of life; end of life care; evidence base; expectation; experience; hospice environment; improved; metastatic colorectal; novel; outcome forecast; palliative chemotherapy; patient oriented; peace; preference; prevent; prognostic; prototype; public health relevance; randomized trial; research and development; response; skills; social stigma; statistics; therapy development; tool

 DESCRIPTION (provided by applicant): The object of the proposed study is to enhance the quality of end-of-life (EOL) cancer care by developing and testing a patient-centered intervention to better inform patients with advanced pancreatic cancer about prognosis and the risks/benefits of their chemotherapy options. Patients with incurable cancer harbor markedly optimistic expectations of prognosis, and often receive palliative chemotherapy without appreciating that it is unlikely to cure. Such misconceptions have been linked to preference for intensive care, lack of advance care planning, underutilization of hospice and greater intensity of EOL care. These markers of poor quality EOL care cause excess suffering for patients and their bereaved caregivers, without objective benefit. Nevertheless, interventions to enhance advanced cancer patients' prognostic understanding are few and underdeveloped. Prior to starting treatment, oncologists typically discuss the risks and benefits of chemotherapy and patients are required to sign written informed consent. This proposal capitalizes on the chemotherapy informed consent (IC) process as a strategic opportunity to equip patients with a better understanding of their illness and treatment options. Building upon her pilot work, in Aim 1) Dr. Enzinger will develop a suite of videos and companion booklets to support IC for advanced pancreatic cancer chemotherapy, which attend to the prognostic information needs identified by patients and caregivers in focus group testing. IC videos will present evidence-based information about chemotherapy risks and benefits, offer context about pancreatic cancer and its prognosis, and feature patients sharing their experiences. In Aims 2 & 3) a pilot randomized trial will evaluate the impact of the intervention on patients' understanding of prognosis and chemotherapy benefits, on processes central to EOL care quality (e.g. advance care planning), and subsequent intensity and quality of EOL care. This intervention is practical, scalable and has immense potential to positively impact the quality of care provided to patients with advanced cancer. This research will facilitate training in three areas vital to the candidate' career goals: health communications, socio-behavioral research, and statistics, in which she has planned rigorous coursework. Dr. Enzinger has two highly qualified and committed mentors: Dr. Deb Schrag, a renowned researcher in cancer care delivery, and Dr. Holly Prigerson, a leader in end-of-life socio-behavioral research. Her advisory panel has deep and varied expertise in health communications, qualitative research, psychometrics, and socio-behavioral interventions. Dr. Enzinger's position as a health services researcher, medical oncologist and palliative care physician at Dana-Farber Cancer Institute likewise offer an ideal environment to support her career. In sum, the proposed research and career development plan will position the candidate to meet her study aims, garner future R01 funding for a definitive study of her intervention, and help launch her career as an independent investigator dedicated to enhancing EOL cancer care by developing and implementing novel communication interventions.

 描述（由申请人提供）：拟议研究的目的是通过开发和测试以患者为中心的干预措施来提高临终 (EOL) 癌症护理的质量，以更好地告知晚期胰腺癌患者预后和治疗方案。无法治愈的癌症患者对预后抱有明显乐观的期望，并且经常接受姑息性化疗，但没有意识到这种误解与化疗的偏好有关。重症监护、缺乏预先护理计划、临终关怀服务利用不足以及强度更大 EOL 护理：这些低质量 EOL 护理的标志会给患者及其家属带来额外的痛苦，而没有客观的益处。然而，在开始治疗之前，肿瘤学家通常会讨论风险。该提案利用化疗知情同意（IC）流程作为一个战略机会，让患者更好地了解自己的疾病和治疗选择。目标 1) Enzinger 博士将开发一套视频和配套小册子，以支持晚期胰腺癌化疗的 IC，满足患者和护理人员在焦点小组测试中确定的预后信息需求。 IC 视频将提供有关化疗风险和预后的循证信息。在目标 2 和 3 中，一项试点随机试验将评估干预措施对患者对预后和化疗益处的理解以及对 EOL 核心过程的影响。护理质量（例如预先护理计划）以及后续的 EOL 护理强度和质量。这种干预措施实用、可扩展，并且具有对晚期癌症患者提供的护理质量产生积极影响的巨大潜力。这项研究将促进三个领域的培训。对于候选人的职业目标至关重要：健康传播、社会行为研究和统计学，Enzinger 博士在其中规划了严格的课程作业，有两位高度忠诚的导师：Deb Schrag 博士，癌症护理领域的著名研究员，和博士。 Holly Prigerson 是临终社会行为研究领域的领导者，她的顾问小组在健康传播、定性研究、心理测量学和社会行为干预方面拥有深厚而丰富的专业知识。丹纳法伯癌症研究所的肿瘤学家和姑息治疗医生同样为她的职业生涯提供了理想的环境。总之，拟议的研究和职业发展计划将使候选人能够实现她的研究目标，获得未来的 R01 资金。对她的干预措施进行明确的研究，并帮助她开启作为一名独立调查员的职业生涯，致力于通过开发和实施新颖的沟通干预措施来加强 EOL 癌症护理。