A Vision of Hope: Integration of Palliative Care in Chronic Pediatric Diseases

希望的愿景：姑息治疗在慢性儿科疾病中的整合

• 批准号: 7936869
• 负责人: GAIL GELLER
• 金额: $ 48.68万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-23 至 2012-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7936869
• 关键词: Adolescent; Adult; Affect; Area; Attitude; Behavior; Caring; Child; Childhood; Chronic; Chronic Disease; Clinical Research; Collaborations; Communication; Decision Making; Development; Diagnosis; Disease; Distress; Duchenne muscular dystrophy; Educational Intervention; Emotional; Family; Foundations; Health Services Accessibility; Hereditary Disease; Individual; Inherited; Intervention; Interview; Life; Life Expectancy; Life Experience; Medical; Medical Care Team; Methods; Muscular Dystrophies; Nature; Palliative Care; Patients; Persons; Phase; Population; Practice Guidelines; Quality of Care; Research; Research Proposals; Sickle Cell Anemia; Support System; System; Testing; Time; Training; Training Programs; Vision; base; care delivery; design; end of life; end of life care; evidence based guidelines; experience; health care delivery; health care quality; improved; palliative; social; young adult

DESCRIPTION (provided by applicant): Under the broad challenge area (04) Clinical Research, this proposal is directly responsive to the following specific challenge topic: 04-NR-102* Methods to Enhance Palliative Care and End-of-Life Research This initiative will develop and test interventions to enhance the quality of care for persons with a life-threatening illness. This research will provide the foundation for the development of evidenced-based guidelines to standardize palliative and end-of-life care. Children, adolescents and young adults are not supposed to get seriously ill or die, but when they do, their lives and their families are forever changed. In addition to the physical challenges faced by young people with chronic, life-threatening diseases, the unpredictability and life- limiting nature of many of these diseases raise significant emotional, spiritual and social difficulties for affected individuals and their families, and create special challenges for the health care team. Too often, a fragmented health care delivery system and lack of support systems add to the distress. These challenges are particularly salient in the context of diseases that, at least currently, have no curative treatments. The absence of a cure can result in a loss of hope. This proposal is designed to improve the quality of care, and instill a new vision of hope, for adolescents, young adults and families affected by chronic, life-threatening diseases by integrating the principles and practices of palliative care into the training of the clinicians who care for them. This project is specifically focused on two genetic conditions, Duchenne Muscular Dystrophy (DMD) and Sickle Cell Disease (SCD). Although there are significant differences between these conditions, both are life-threatening and life-limiting and are therefore highly amenable to palliative care. Improved technologic and medical interventions have significantly increased the life expectancy of affected individuals but this has created new challenges with regard to transitioning patients from pediatric to adult care clinicians and settings. The specific aims of our project are to (1) understand the lived experiences and unmet needs of adolescents and young adults with these chronic, life-threatening diseases, and the impact of caring for these populations on interdisciplinary teams of clinicians; and (2) enhance the integration of palliative care principles and practices through the training of interdisciplinary professionals, patients and families. We will accomplish these aims in three phases. First, we will develop and/or modify documentary training videos based on interviews with patients, families and the clinicians who care for them. Second, we will adapt an existing training program that incorporates palliative care principles in the delivery of care for these two populations. Finally, we will compare/assess the efficacy of two different training interventions in improving clinician attitudes and behaviors, and patient experiences, with respect to several components of palliative care. This project is likely to have significant impact on reducing the attitudinal and systemic barriers to the integration of comprehensive palliative care. Our results will inform the refinement of educational and practice guidelines with regard to the integration of palliative care principles into DMD and SCD care as well as its application to other life-limiting chronic conditions, and result in long term improvements in the delivery of quality health care for young people with chronic disease. This proposal is designed to improve the quality of care, and instill a new vision of hope, for adolescents, young adults and families affected by Duchenne Muscular Dystrophy (DMD) and Sickle Cell Disease (SCD), two of the most common chronic, inherited, life- threatening diseases, by integrating the principles and practices of palliative care into the training of the clinicians who care for them.

描述（由申请人提供）：在广泛的挑战领域（04）临床研究下，该提案直接响应以下特定挑战主题：04-NR-102*增强姑息治疗和寿命终止研究的方法，该举措将开发和测试干预措施，以增强对生命疾病疾病的人的护理质量。这项研究将为制定基于经验的指南的基础，以标准化姑息治疗和临终关怀。儿童，青少年和年轻人不应该重病或死亡，但是当他们这样做时，他们的生活和家人将永远改变。除了患有慢性，威胁生命的疾病的年轻人面临的身体挑战外，这些疾病中许多疾病的不可预测性和生活限制性质为受影响的个人及其家人带来了重大的情感，精神和社会困难，并为医疗保健团队带来了特殊的挑战。经常，零散的医疗保健提供系统和缺乏支持系统会增加困扰。在疾病的背景下，这些挑战尤其显着，至少目前没有治愈性治疗。缺乏治愈可能会导致希望丧失。该建议旨在提高护理质量，并为青少年，年轻人和受到长期威胁生命的疾病影响的青少年，年轻人和家庭灌输新的希望，通过将姑息治疗的原理和实践整合到对照料他们的临床医生的培训中。该项目专门针对两种遗传条件，即杜钦肌营养不良（DMD）和镰状细胞病（SCD）。尽管这些条件之间存在显着差异，但都威胁生命和限制生命，因此高度适合姑息治疗。改进的技术和医疗干预措施已大大提高了受影响个体的预期寿命，但这在将患者从儿科转变为成人护理临床医生和环境方面带来了新的挑战。我们项目的具体目的是（1）了解这些长期危及生命的疾病的青少年和年轻人的生活经验和未满足的需求，以及对这些人群的关怀对临床医生跨学科团队的影响； （2）通过培训跨学科专业人员，患者和家庭来增强姑息治疗原则和实践的整合。我们将在三个阶段完成这些目标。首先，我们将根据对照料患者，家庭和临床医生的访谈制定和/或修改纪录片培训视频。其次，我们将调整现有的培训计划，该计划将姑息治疗原则纳入这两个人群的护理中。最后，我们将比较/评估两种不同培训干预措施在改善临床医生的态度和行为以及患者经验方面的功效，相对于姑息治疗的几个组成部分。该项目可能会对减少综合姑息治疗的整合的态度和系统障碍产生重大影响。我们的结果将为教育和实践指南的完善，以将姑息治疗原则整合到DMD和SCD护理中，以及其应用于其他限制生命的慢性疾病，并将其用于长期改善慢性病年轻人的优质医疗保健。该建议旨在提高护理质量，并为受希望的青少年，年轻人和家庭灌输希望的新愿景，并受到Duchenne肌肉营养不良症（DMD）和镰状细胞疾病（SCD）的影响，这是两种最常见的慢性，继承，继承，生活威胁性疾病，通过将疾病纳入临时性培训的培训中，以使他们能够将其整合到临时性的培训中。