Improving Understanding of Quality End of Life Care Using a Dyadic Approach

使用二元方法提高对优质临终护理的理解

• 批准号: 10735211
• 负责人: Sara L. Douglas
• 金额: $ 69.25万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-13 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10735211
• 关键词: Advance Care Planning; Advanced Malignant Neoplasm; Caregivers; Caring; Categories; Cessation of life; Collaborations; Communication; Consensus; Correlation Studies; Development; Diagnosis; Distant Metastasis; Emergency department visit; Ensure; Exclusion; Family; Fostering; Goals; Grief reaction; Health; Health Personnel; Healthcare; Hospice Care; Hospitalization; Individual; Intervention; Investigation; Knowledge; Length of Stay; Malignant Neoplasms; Mediating; Methods; Modeling; Outcome; Palliative Care; Patient Care; Patient Preferences; Patients; Play; Process; Proxy; Quality of Care; Quality of life; Research; Resources; Risk; Role; Science; Severities; Symptoms; Theoretical model; Time; Value of Life; aggressive therapy; care outcomes; contextual factors; end of life; end of life care; end-of-life decision making; experience; health care service; improved; informal caregiver; insight; loved ones; member; preference; provider factors; research study; satisfaction; social; theories

Project Summary/Abstract There is strong national consensus about the need to deliver high-quality care at the end of life (EOL) for patients with advanced (distant metastasis) cancer. Yet, despite the efforts of healthcare providers, many patients receive care that they do not want at EOL and leave their informal caregivers struggling with complicated grief months after their death. Research, to date, has tended to define quality EOL care using unidimensional factors that do not encompass key aspects of EOL care, such as patient and family-centered EOL care that holds individual preferences for EOL care at its core. Specifically, quality EOL care has been defined in terms of either: (a) amount of aggressive health care services received, or (b) whether it was “goal concordant care”---care that aligned with the patient’s preferences and goals for EOL care. These approaches have provided limited perspectives of what constitutes quality EOL care. Aggressiveness metrics (e.g., days of hospitalization, number of emergency department visits), for example, ignore the fact that some patients want aggressive care at EOL and goal concordant care metrics ignore the post-death QOL of caregivers. It is usually the patient-caregiver dyad who experience the trajectory of care, and who need support throughout. With patients continuing to receive EOL care that they do not want and caregivers struggling with poor post- death outcomes such as complicated grief, we need a new paradigm for conceptualizing quality EOL care. This project will be the first to apply the principles of a dyadic theory of illness to examine the relationships between patient-caregiver dyadic factors (e.g., dyadic incongruence for patient symptom severity) and dyadic quality EOL care. We have reconceptualized quality EOL care to be care that benefits both members of the dyad and is present when the patient identifies the receipt of goal concordant care at EOL and the caregiver does not demonstrate complicated grief 3 months post-death. This longitudinal, descriptive, correlational study will address the following aims: Aim 1: Examine the influence of dyadic appraisal of illness factors upon dyadic quality EOL care (present or absent); Aim 2: Examine the influence of risk-protective contextual factors (individual, dyadic, family/social) on dyadic appraisal of illness factors (symptoms, EOL treatment preferences, EOL values) over time; and Aim 3: Assess the extent to which dyadic appraisal of illness factors mediate the relationship between risk-protective contextual factors and dyadic quality EOL care. Identifying specific dyadic variables (such as symptom severity incongruence) that relate to dyadic outcomes can facilitate the development of dyadic interventions aimed at enhancing communication or knowledge, for example, for both members of the dyad over time. By enhancing dyadic outcomes, we will have better stewardship of healthcare resources for patients at EOL and ensure improved quality EOL care for patients and improved post-death outcomes for caregivers---those who must carry on after the patient’s death.

项目摘要/摘要 有强烈的国家共识，需要提供高质量的生命末期护理(EOL) 晚期(远处转移)癌症患者。然而，尽管医疗保健提供者做出了努力，许多人 患者在EOL接受了他们不想要的护理，让他们的非正式护理人员苦苦挣扎 在他们死后的几个月里，他们经历了复杂的悲痛。到目前为止，研究倾向于定义高质量的EOL护理，使用 不包括EOL护理的关键方面的单一因素，如以患者和家庭为中心 将个人对EOL护理的偏好作为其核心的EOL护理。具体地说，优质的EOL护理一直是 定义为：(A)接受积极保健服务的数量，或(B)是否为“目标” 协调性护理“-符合患者对EOL护理的偏好和目标的护理。这些方法 对什么是高质量的EOL护理提供了有限的观点。攻击性指标(例如， 住院、急诊科就诊次数)，例如，忽略了一些患者想要 EOL的积极护理和目标一致的护理指标忽略了照顾者死后的生活质量。它是 通常是经历护理轨迹的病人和照顾者二人组，他们自始至终都需要支持。 随着患者继续接受他们不想要的EOL护理，照顾者努力应对糟糕的术后- 对于复杂的悲痛等死亡后果，我们需要一种新的范式来概念化高质量的EOL护理。 这个项目将是第一个应用疾病二元理论的原理来检查 患者-护理者二元因素(例如，患者症状严重程度的二元不一致)和二元因素之间的关系 优质的EOL护理。我们已经重新定义了高质量的EOL护理，使双方都受益 当患者确定在EOL和照顾者接受目标一致的护理时，DYAD和在场 死后3个月未表现出复杂的悲痛。这项纵向的、描述性的、相关的研究 将解决以下目标：目标1：检查疾病因素的向量评估对向量的影响 高质量的EOL护理(存在或不存在)；目标2：检查风险保护背景因素的影响 (个人、二元、家庭/社会)对疾病因素的二元评估(症状、EOL治疗偏好、 EOL值)；以及目标3：评估疾病因素的二元评估在多大程度上调节 风险保护性背景因素与二元性优质EOL护理之间的关系。标识特定并元 与二元结果相关的变量(如症状严重程度不一致)可以促进 制定旨在加强沟通或知识的二元干预措施，例如，对两者 随着时间的推移，二元体的成员。通过增强二元结果，我们将更好地管理医疗保健 为EOL患者提供资源，并确保改善对患者的EOL护理质量和改善死亡后 照顾者的结局-那些在病人死后必须继续的人。