Mapping Multidimensional Illness Trajectories of Patients With ESKD

描述(申请人提供)：在美国，需要维持性透析的终末期肾病(ESKD)患者的数量正在迅速增加。ESKD通常伴有多种并发症，包括其他器官衰竭。并发症很常见，它们会损害生存和生活质量。当急性疾病叠加在并存疾病上时，它们通常会导致死亡。很少有人逃脱危及生命的急性发作；然而，人们对ESKD患者在经历危及生命的急性发作时的症状、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。这些数据非常需要用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、身体状况 对200名在12个月内有急性生命威胁事件和死亡风险的ESKD患者进行抽样调查，以了解他们的功能、心理社会需求以及情绪和精神健康状况。具体目的是(1)确定ESKD患者在经历急性生命威胁事件后的生活质量五个维度的纵向模式，即症状、身体功能、心理社会需求以及情感和精神健康；(2)检查这五个生活质量维度之间的关系以及急性生命威胁事件对关系的影响；以及(3)检查这五个维度与生存的轨迹之间的关系。这项研究将使用前瞻性描述性设计，重复测量超过12个月，或直到患者死亡。生活质量的五个维度将每月进行评估。线性混合模型将被用作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素之间的关系的主要统计技术。这项研究将提供数据，帮助识别和满足ESKD患者的复杂需求，这些患者经历了叠加在透析需求和合并症上的急性生命威胁事件。

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.