Mapping Multidimensional Illness Trajectories of Patients With ESKD

描述（由申请人提供）：在美国，需要维持透析的终末期肾病（ESKD）患者数量迅速增加。ESKD通常伴有多种合并症，包括其他器官衰竭。并发症是常见的，它们破坏了生存和生活质量。当急性疾病与合并症叠加时，它们通常会导致死亡。很少有人能逃脱急性危及生命的发作;但人们对ESKD患者在经历急性危及生命的发作时的症状、身体功能、心理社会需求以及情感和精神健康的轨迹知之甚少。非常需要这些数据来指导这一人群的姑息治疗。因此，这项拟议的研究将确定症状的轨迹，身体 功能，心理社会需求，以及情感和精神健康的200例ESKD患者的样本中，这些患者在12个月内经历急性危及生命事件和死亡的风险很高。具体目标是：（1）确定生活质量五个维度的纵向模式，即，症状、身体功能、心理社会需求以及经历急性危及生命事件的ESKD患者的情感和精神健康;（2）检查这五个维度的生活质量随时间的关系以及急性危及生命事件对这些关系的影响;（3）检查五个维度的轨迹与生存的关系。本研究将采用前瞻性描述性设计，在12个月内重复测量，或直至患者死亡。生活质量的五个方面将每月进行评估。将使用线性混合模型作为主要统计技术，用于评估生活质量五个维度的纵向模式以及每个维度的重复测量和多个预测因子之间的关系。本研究将提供数据，以帮助识别和满足ESKD患者的复杂需求，这些患者经历了急性危及生命的事件，叠加了透析和合并症的需求。

DESCRIPTION (provided by applicant): The number of patients with end-stage kidney disease (ESKD) requiring maintenance dialysis is increasing rapidly in the U.S. ESKD is typically accompanied by multiple co-morbidities, including other organ failure. Complications are common, and they undermine survival and quality of life. When acute illnesses are superimposed on co-morbidities, they typically cause death. Few escape acute life-threatening episodes; yet little is known about the trajectories of symptoms, physical functioning, psychosocial needs, and emotional and spiritual well-being of patients with ESKD when they experience acute life-threatening episodes. Such data are in great need to guide palliative care for this population. This proposed study will therefore identify trajectories of symptoms, physical functioning, psychosocial needs, and emotional and spiritual well-being in a sample of 200 patients with ESKD who are at a high risk of experiencing acute life-threatening events and mortality within 12 months. Specific aims are to (1) identify longitudinal patterns of the five dimensions of quality of life, i.e., symptoms, physical functioning, psychosocial needs, and emotional and spiritual well- being of patients with ESKD who experience acute life-threatening events; (2) examine the relationships among these five dimensions of quality of life over time and the impact of acute life-threatening events on the relationships; and (3) examine the relationships of trajectories of the five dimensions to survival. This study will use a prospective descriptive design with repeated measures over 12 months, or until patient death. The five dimensions of quality of life will be assessed monthly. A linear mixed model will be used as the primary statistical technique for assessing the longitudinal patterns of the five dimensions of quality of life and the relationships among the repeated measures and multiple predictors of each dimension. This study will provide data to help identify and meet the complex needs of patients with ESKD who experience acute life-threatening events superimposed on the demands of dialysis and co-morbidities.