Trajectories of Serious Illness: Patients and Caregivers

严重疾病的轨迹：患者和护理人员

• 批准号: 7066076
• 负责人: James A. Tulsky
• 金额: $ 63.72万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-08-01 至 2008-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7066076
• 关键词: awareness; behavioral /social science research tag; caregivers; chronic obstructive pulmonary disease; clinical research; congestive heart failure; coping; death; functional ability; gender difference; grief; health care model; health care quality; health care service utilization; human subject; hypercapnia; interview; longitudinal human study; neoplasm /cancer palliative treatment; patient oriented research; quality of life; racial /ethnic difference; terminal patient care

DESCRIPTION (provided by applicant): Dying patients confront complex and unique challenges that threaten their physical, psychosocial and spiritual integrity. Despite recent interventions to improve palliative care, little is known about how dying patients and their families progress along the continuum from serious illness to death, and the most effective strategies for integrating curative and palliative care. The purpose of this research is to follow patients with three representative advanced chronic illnesses - metastatic cancer, NYHA Class IV congestive heart failure, and chronic obstructive pulmonary disease with hypercapnea - and their caregivers prospectively in order to describe multiple dimensions of the end-of-life experience. The specific aims of this proposal are to: 1. Describe patients' trajectories of physical symptoms, functional status, emotional function, quality of life, preparation for death, spirituality, and awareness of dying. 2. Describe caregivers' trajectories of anticipatory grief, caregiver burden and awareness of dying. 3. Examine the relationships between these trajectories (e.g., patient spirituality and functional status). 4. Determine the extent to which these trajectories are modified by patient and caregiver characteristics (e.g., ethnicity, disease type, coping style) and health services utilization (e.g., emergency department visits, hospitalizations, hospice enrollment). 5. Assess, in post-death interviews, timing of caregivers' realizations that the patient was dying, and locate disease time points along pre-death patient and caregiver trajectories. Two hundred forty patients and their primary caregivers living within a circumscribed geographic region will be enrolled. Key domains as listed in the specific aims will be assessed monthly until death, or for up to two years. Longitudinal variables will be analyzed using generalized growth mixture models and linear mixed effects models, and four hypotheses tested. The results from these analyses will be used to develop clinical profiles of patient and caregiver subgroups, identifying times of heightened need and potential targets for intervention. Knowledge of domain-specific trajectory patterns, such as abrupt versus progressive functional decline, and interactions between domains, such as physical symptoms, mood and awareness of dying, will illuminate our understanding of how seriously ill patients and their caregivers experience the transition from serious illness to death, and guide efforts to improve care of the dying.

描述（由申请人提供）：垂死的患者面临着威胁其身体，社会心理和精神完整性的复杂而独特的挑战。 尽管最近采取了改善姑息治疗的干预措施，但对垂死的患者及其家人如何从严重疾病到死亡以及整合治愈性和姑息治疗的最有效策略知之甚少。这项研究的目的是跟踪患有三种代表性晚期慢性疾病的患者 - 转移性癌症，NYHA IV级充血性心力衰竭和慢性阻塞性肺部疾病患有超细胞核对 - 以及他们的护理人员前瞻性，以描述终止生命终止经验的多个维度。 该提案的具体目的是： 1。描述患者的身体症状，功能状况，情绪功能，生活质量，死亡的准备，灵性和对死亡的意识的轨迹。 2。描述看护人的预期悲伤，照顾者负担和对死亡的意识的轨迹。 3。检查这些轨迹之间的关系（例如，患者的灵性和功能状态）。 4。确定这些轨迹是通过患者和照料者特征（例如种族，疾病类型，应对方式）和健康服务利用（例如，急诊科，住院，住院，临终关怀注册）来修改这些轨迹的程度。 5。在死后​​访谈中评估护理人员对患者死亡的时机的实现，并在死亡前患者和护理人员的轨迹上找到疾病时间点。 将招募有240名患者及其主要的护理人员居住在限制的地理区域中。特定目标中列出的关键领域将每月评估直到死亡或长达两年。 将使用广义生长混合模型和线性混合效应模型和四个假设进行了测试，将分析纵向变量。这些分析的结果将用于开发患者和护理人员亚组的临床特征，确定需求增长的时间以及潜在的干预目标。了解域特异性轨迹模式的知识，例如突然与进行性功能下降，以及诸如身体症状，情绪和对死亡的意识之类的领域之间的相互作用，将阐明我们对严重患者及其照料者如何从严重疾病到死亡的过渡，以及指导对垂死的护理的努力。