Integrating Palliative Care for Patients with Idiopathic Pulmonary Fibrosis and their Caregivers

对特发性肺纤维化患者及其护理人员进行姑息治疗

• 批准号: 9357704
• 负责人: Kathleen Oare Lindell
• 金额: $ 15.24万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-26 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9357704
• 关键词: Address; Admission activity; Advance Care Planning; Affect; Aging; Caregivers; Caring; Cessation of life; Clinical; Clinical Research; Decision Making; Deterioration; Development Plans; Diagnosis; Disease; Educational process of instructing; Environment; Europe; Exhibits; Family Caregiver; Focus Groups; Fright; Goals; Hamman-Rich syndrome; Hospitals; Incidence; Individual; Instruction; Intensive Care Units; Interstitial Lung Diseases; Intervention; Journals; Knowledge; Letters; Life; Literature; Lung; Lung Transplantation; Lung diseases; Measures; Medical; Mentors; Multimedia; Newly Diagnosed; Nurses; Operative Surgical Procedures; Palliative Care; Patient Care; Patient Care Planning; Patient Education; Patients; Persons; Pharmaceutical Preparations; Population; Program Development; Provider; Publications; Publishing; Quality of life; Randomized; Readiness; Recruitment Activity; Research; Research Personnel; Research Project Grants; Resources; Respiratory physiology; Self Management; Solid; Stress; Supportive care; Symptoms; Tablets; Testing; Training; Training Programs; Transplantation; Universities; Washington; Work; base; clinically relevant; collaborative environment; communication theory; design; digital; end of life; end of life care; experience; impression; improved; innovation; multidisciplinary; novel therapeutics; outcome forecast; quality of death; retention rate; standard of care; stress symptom; symptom management; therapy development; treatment as usual; treatment strategy

ABSTRACT Candidate: This candidate has a relevant clinical background, solid research experience working on the Idiopathic Pulmonary Fibrosis (IPF) intervention development, an extremely strong publication record with several being published in high impact journals, and highly recommended letters of reference. Her research has revealed multiple end of life (EOL) concerns of patients/family caregivers. Unfortunately many of these concerns continue today. Her proposed research is designed to test ways to gain broad support for the early and uniform initiation of palliative care to overcome this barrier. Her long-term goal is to become a successful independent academic researcher who designs and tests interventions to improve palliative care preparedness of patients with life-limiting illness and their family caregivers. The proposed training program will include didactic and clinical instruction in communication theory, palliative care decision-making and the design and implementation of clinical research projects. The planned development program includes a mentored practicum at the University of Washington, an intensive 2-week Palliative Care Course at Harvard University, multidisciplinary seminars and training from mentors providing specific expertise. Environment: The work environment at the University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC is an extremely strong clinical environment abundant in both physical and intellectual resources. The environment is strengthened by appropriate activities at Harvard and University of Washington. Research: IPF is a disease of aging associated with intense medical and financial burden and expected to grow in incidence within the US population. Median survival from diagnosis is 3.8 years, although some patients succumb to a rapid death within 6 months. New therapies have recently become available. While these medications slow the rate of pulmonary deterioration, they have no impact on ultimate survival or quality of life. Although transplantation is an effective surgical therapy, less than 20% of patients ever receive a lung transplant. The remaining 80% have few treatment options and a likely rapidly progressive downhill course. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. At the end of life, IPF patients and their caregivers experience stress, symptom burden, poor quality of life, and inadequate preparedness for end-of-life care planning. The proposed study will measure feasibility, acceptability, and impact of a Supportive Care intervention. Patients with IPF and their caregivers will be randomized to receive this intervention or usual care. The intervention will include information about the disease, self-management strategies, and introduction to advanced care planning in a format with enhanced content available across multiple domains (face-to-face, printed material, digital (tablet) delivered by an interventionist. The usual care group will be provided with routine printed patient education. The Specific Aims include: Aim 1: Determine feasibility (as measured by recruitment and retention rate) of the Supportive Care intervention for IPF patients and caregivers. Aim 2: Determine the acceptability of the Supportive Care intervention on knowledge regarding disease, self- management and treatment strategies for patients and their caregivers. Aim 3: Assess impact of the Supportive Care intervention on patient stress, symptom burden, quality of life, and completion of advanced care planning as compared to care as usual. The overarching goal of this proposal is determine the feasibility, acceptability and preliminary impact of an early, integrated palliative care intervention, hereafter termed Supportive Care, in patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers that will positively impact their experiences at the end-of-life (EOL). By increasing knowledge of the disease, teaching self-management strategies, and facilitating preparedness with EOL planning, we will begin to address a critical gap in the care of not just IPF patients but also all patients with advanced lung disease (high medical utilization and high symptom burden in the face of a fatal illness).

摘要 候选人：该候选人具有相关的临床背景，扎实的研究经验， 特发性肺纤维化（IPF）干预开发，一个非常强大的出版记录， 有几篇发表在高影响力的期刊上，并强烈推荐信。她的研究 已经揭示了患者/家庭护理者的多种生命结束（EOL）担忧。不幸的是，其中许多 今天，人们的关切仍在继续。她提出的研究旨在测试获得早期广泛支持的方法， 并统一启动姑息治疗，以克服这一障碍。她的长期目标是成为一名成功的 设计和测试干预措施以改善姑息治疗准备的独立学术研究人员 病人和他们的家庭照顾者。拟议的培训计划将包括 沟通理论，姑息治疗决策和设计的教学和临床指导， 实施临床研究项目。计划的发展计划包括一个指导 华盛顿大学的实习，哈佛大学为期2周的密集姑息治疗课程， 多学科研讨会和由提供具体专门知识的导师提供的培训。 工作环境： 匹兹堡大学Dorothy P. & Richard P. Simmons间质研究中心 肺部疾病在UPMC是一个非常强大的临床环境，在身体和智力丰富 资源哈佛和华盛顿大学的适当活动加强了环境。 研究：IPF是一种老龄化疾病，与严重的医疗和经济负担相关，预计将增长 在美国人口中的发病率。诊断后的中位生存期为3.8年，尽管有些患者 在六个月内迅速死亡。最近出现了新的治疗方法。虽然这些 虽然药物可以减缓肺部恶化的速度，但它们对最终生存或生活质量没有影响。 虽然移植是一种有效的外科治疗方法，但只有不到20%的患者接受过肺移植。 移植其余80%的患者几乎没有治疗选择，并且可能会迅速进行性下降。 尽管有致命的预后，我们发现，病人和照顾者往往不能理解穷人 随着疾病的不断发展，在生命结束时，IPF患者及其护理人员 经历压力、症状负担、生活质量差和临终护理准备不足 规划 拟议的研究将衡量支持性护理干预的可行性、可接受性和影响。 IPF患者及其护理者将随机接受该干预或常规护理。的 干预将包括有关疾病的信息，自我管理策略，并介绍 以具有跨多个域可用的增强内容的格式的高级护理计划（面对面， 印刷材料，数字（平板电脑）由干预者提供。将为常规护理组提供 常规打印的患者教育。具体目标包括： 目的1：确定支持性治疗的可行性（通过招募和留存率衡量） IPF患者和护理人员的干预。 目的2：确定支持性护理干预对疾病知识、自我认知、 管理和治疗策略，为患者及其护理人员。 目的3：评估支持性护理干预对患者压力、症状负担、生活质量的影响， 和完成先进的护理规划相比，护理如常。 本提案的总体目标是确定可行性、可接受性和初步影响 早期综合姑息治疗干预，以下称为支持性治疗， 特发性肺纤维化（IPF）及其护理人员，这将对他们在 寿命终止（EOL）。通过增加对疾病的了解，教授自我管理策略， 随着EOL计划的准备，我们将开始解决不仅是IPF患者， 此外，所有患有晚期肺病的患者（高医疗利用率和高症状负担， 致命的疾病）。