Trajectories of Serious Illness: Patients and Caregivers

描述(由申请人提供)：临终病人面临复杂而独特的挑战，威胁到他们的身体、心理社会和精神完整性。尽管最近进行了改善姑息治疗的干预措施，但人们对临终患者及其家人从严重疾病到死亡的过程是如何进展的，以及整合治疗和姑息治疗的最有效策略知之甚少。这项研究的目的是前瞻性地跟踪三种具有代表性的晚期慢性病患者-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呼气症-以及他们的照顾者，以描述生命结束体验的多个维度。 这项建议的具体目的是： 1.描述患者的身体症状、功能状态、情绪功能、生活质量、死亡准备、精神状态和对死亡的意识的轨迹。 2.描述照顾者预期的悲伤、照顾者的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，患者的精神状态和功能状态)。 4.确定患者和照顾者的特征(如种族、疾病类型、应对方式)和卫生服务利用情况(如急诊科就诊、住院、临终关怀登记)在多大程度上改变了这些轨迹。 5.在死后访谈中，评估照顾者意识到患者即将死亡的时间，并沿着临终患者和照顾者的轨迹确定疾病时间点。 240名居住在限定地理区域内的患者和他们的主要照顾者将被纳入研究。具体目标中列出的关键领域将每月进行评估，直到死亡，或最长两年。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，并对四个假设进行检验。这些分析的结果将被用于制定患者和照顾者亚组的临床概况，确定高度需要干预的时间和潜在目标。了解特定领域的轨迹模式，如突发性和渐进性功能下降，以及领域之间的相互作用，如身体症状、情绪和对死亡的意识，将有助于我们理解重症患者及其照顾者如何经历从严重疾病到死亡的过渡，并指导努力改善对垂死患者的护理。

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.