Trajectories of Serious Illness: Patients and Caregivers

描述（由申请人提供）：垂死的病人面临着复杂和独特的挑战，威胁到他们的身体，心理和精神的完整性。 尽管最近的干预措施，以改善姑息治疗，很少有人知道如何垂死的病人和他们的家人进展沿着连续体从严重的疾病到死亡，以及最有效的战略，整合治疗和姑息治疗。本研究的目的是前瞻性地随访三种代表性晚期慢性疾病患者-转移性癌症、NYHA IV级充血性心力衰竭和慢性阻塞性肺疾病伴高碳酸血症-及其护理人员，以描述多个维度的临终体验。 这项建议的具体目标是： 1.描述患者的身体症状、功能状态、情感功能、生活质量、死亡准备、灵性和死亡意识的轨迹。 2.描述照顾者的预期悲伤，照顾者负担和死亡意识的轨迹。 3.检查这些轨迹之间的关系（例如，患者的精神状态和功能状态）。 4.确定这些轨迹被患者和护理人员特征（例如，种族、疾病类型、应对方式）和卫生服务利用（例如，急诊科就诊、住院、临终关怀登记）。 5.在死亡后的访谈中，评估护理人员意识到患者即将死亡的时间，并沿着沿着死亡前患者和护理人员的轨迹定位疾病时间点。 将入组240例居住在限定地理区域内的患者及其主要护理人员。具体目标中列出的关键领域将每月进行评估，直至死亡，或长达两年。 纵向变量将使用广义增长混合模型和线性混合效应模型进行分析，并测试四个假设。这些分析的结果将用于开发患者和护理人员亚组的临床资料，确定需要增加的时间和潜在的干预目标。特定领域的轨迹模式，如突然与进行性功能下降，以及领域之间的相互作用，如身体症状，情绪和死亡意识，将阐明我们对重病患者及其护理人员如何经历从重病到死亡的过渡的理解，并指导改善临终护理的努力。

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.