IMPROVING PROGNOSTIC COMMUNICATION IN PEDIATRIC CANCER

改善儿科癌症的预后沟通

• 批准号: 10524641
• 负责人: Erica Carmen Kaye
• 金额: $ 25.21万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-01 至 2027-11-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10524641
• 关键词: Advanced Malignant Neoplasm; Award; Bereavement; Cancer Patient; Child; Child Care; Childhood; Clinical; Clinical Investigator; Clinical Research; Clinical Trials Design; Communication; Communication Research; Concept Formation; Data; Data Analyses; Decision Making; Development Plans; Diagnosis; Disclosure; Distress; Documentation; Enrollment; Evolution; Family; Future; Goals; Intervention; Intervention Studies; Interview; Investigation; K-Series Research Career Programs; Knowledge; Lead; Learning; Longitudinal Studies; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Mentors; Mentorship; Methods; Oncologist; Palliative Care; Parents; Patient Preferences; Patients; Pediatric Oncologist; Pediatric Oncology; Perception; Phase I/II Trial; Pilot Projects; Positioning Attribute; Process; Prognosis; Randomized Controlled Trials; Recommendation; Refractory; Reporting; Research; Research Personnel; Science; Site; Structure; Testing; Therapeutic; Time; Training; Work; acceptability and feasibility; advanced disease; aged; anticancer research; arm; base; cancer care; cancer palliative treatment; career; career development; cognitive testing; cohort; communication behavior; design; dissemination trial; evidence base; experience; feasibility testing; improved; member; personalized approach; phase 3 study; pilot test; post intervention; preference; preservation; primary outcome; prognostic; prognostication; programs; randomized trial; secondary outcome; skills; stakeholder perspectives; therapy design; tool; usability; user centered design

PROJECT SUMMARY/ABSTRACT My career goal is to develop an independent research program focused on improving communication for children with advancing cancer and their families. When parents understand prognosis, children with advancing cancer are more likely to receive palliative care and interventions to alleviate suffering. Most patients and parents want clear prognostic information, yet our preliminary data show that pediatric oncologists often delay or censor poor prognostic disclosure. This K08 Application describes a career development plan that will enable me to evolve into a successful independent clinical investigator with a career focused on improving communication in pediatric cancer care. The short-term goal of this project is to develop an evidence-based, stakeholder-driven prognostic communication guide and documentation template to support timely prognostic disclosure in the setting of advancing childhood cancer. First, we will interview patients, parents, and oncologists to define stakeholder preferences and recommendations for timing, content, and delivery of prognostic information (Research Aim 1). Second, we will facilitate a Stakeholder Panel to develop a conceptual framework and design a patient/parent- centered prognostic communication guide and documentation template, which will undergo usability and cognitive testing with oncologist beta testers. If advised by stakeholders, we will develop and test patient/parent- centered tools as well (Research Aim 2). Third, we will assess intervention feasibility and acceptability in a single- arm pilot study with pediatric oncologists and advancing cancer patient-parent dyads (Research Aim 3). This career development award will prepare me to achieve my long-term goals as an independent investigator at the intersection of pediatric cancer, palliative care, and communication research. Through structured mentorship, formal coursework, and hands-on clinical research experience, I will expand my training in the science of measuring and modifying communication behaviors (Training Aims 1-3), learn and apply participatory design methods to engage pediatric cancer stakeholders, particularly children, in data synthesis (Training Aim 2), acquire formal training and practical experience with designing interventions for dissemination (Training Aims 2-3), and gain knowledge and skills in clinical trial design and conduct (Training Aim 3). Upon completion of this Award, I will have the data and skills to study this intervention in a multi-site randomized control trial, as the basis for a future R01 submission. The rigorous training provided by this Award will prepare me for a career dedicated to improving communication for children with advancing cancer and their families.

项目总结/摘要 我的职业目标是发展一个独立的研究项目，专注于改善沟通 癌症晚期儿童及其家人的健康。 当父母了解预后时，癌症进展的儿童更有可能接受姑息治疗 以及减轻痛苦的干预措施。大多数患者和父母希望获得明确的预后信息，但我们的研究表明， 初步数据显示，儿科肿瘤学家经常延迟或审查不良预后的披露。 此K 08应用程序描述了一个职业发展计划，将使我能够发展成为一个成功的 独立的临床研究者，职业生涯专注于改善儿科癌症护理的沟通。 该项目的短期目标是开发一种基于证据的，由患者驱动的预后评估方法。 沟通指南和文件模板，以支持在 促进儿童癌症。首先，我们将采访患者、父母和肿瘤学家，以确定利益相关者 偏好和建议的时间，内容和预后信息的交付（研究目标1）。 第二，我们会协助成立一个持份者小组，制定一个概念框架，并设计一个病人/家长- 集中的预后沟通指南和文档模板，将进行可用性测试， 与肿瘤学家测试者进行认知测试如果利益相关者提出建议，我们将开发和测试患者/父母- 中心的工具，以及（研究目标2）。第三，我们将评估干预的可行性和可接受性，在一个单一的- 与儿科肿瘤学家和癌症患者-父母配对的前瞻性研究（研究目的3）。 这个职业发展奖将为我实现作为独立调查员的长期目标做好准备 在儿科癌症，姑息治疗和沟通研究的交叉点。通过结构化 导师，正式的课程，和实践的临床研究经验，我将扩大我的培训， 测量和改变沟通行为的科学（培训目标1-3），学习和应用参与式 设计方法，使儿科癌症利益相关者，特别是儿童参与数据合成（培训目标 2），获得设计传播干预措施的正式培训和实践经验（培训目标 2-3），并获得临床试验设计和实施方面的知识和技能（培训目标3）。 在完成这项奖励后，我将有数据和技能，在一个多中心的随机研究中研究这种干预措施。 对照试验，作为未来R 01提交的基础。该奖项提供的严格培训将为 我的职业生涯致力于改善与癌症进展的儿童及其家庭的沟通。