Symptom burden in End-Stage Liver Disease patient-caregiver dyads

 描述(申请人提供)：终末期肝病(ESLD)是一种限制生命的疾病，除肝移植外，不可避免地会导致身体和心理上的痛苦和死亡。不幸的是，在大约40万受ESLD影响的美国人中，大多数人不是肝脏移植的候选者，每年接受肝移植的人数不到6700人。在接下来的20年里，患有ESLD的人口将继续增长，从病毒性肝炎相关的死亡转变为脂肪肝导致的越来越高的死亡率。尽管死于ESLD的患者可能有类似于其他晚期疾病的经历，但人们对ESLD的症状负担和典型疾病轨迹知之甚少。已知的是，面临死亡的ESLD患者很少得到适当的症状处理和姑息治疗。因此，他们复杂的护理负担留给了照顾者，他们自己也面临着生活质量(QOL)下降和死亡率上升的风险。由于肝病的特定方面(例如，药物滥用，通常与家庭冲突有关)，这种对照顾者的已知后果在ESLD中可能会加剧。不幸的是，S很少知道系统性红斑狼疮患者和他们的照顾者的身体和心理症状负担是如何随着时间的推移而变化的，以及这些变化对他们生活质量的影响。迫切需要确定患者和照顾者的亚群，他们将从专门针对ESLD的早期姑息护理干预中受益最大。这项研究计划的长期目标是设计这样的干预措施，以最大限度地减少症状负担，并在ESLD患者接近生命末期时改善患者-照顾者双方的生活质量。这项拟议研究的目标是：1)确定具有不同症状变化轨迹的患者和照顾者亚组，并量化这些轨迹与患者和照顾者结局的关联；2)确定可能需要早期姑息治疗干预的不同类型的患者-照顾者二元组。拟议的二元研究采用纵向前瞻性描述性设计，有三个主要目的：目的1是确定成人ESLD患者身体和心理症状负担的变化轨迹；目标2是确定成年ESLD患者照顾者身体和心理症状负担变化的轨迹；目标3是确定将受益于早期定制姑息干预的患者-照顾者二元类型的模式和预测因素。240名患有ESLD的门诊患者和240名护理人员将通过两家医院的肝脏诊所进行登记。将使用面谈和电话访谈期间完成的标准化工具，在12个月内收集五个时间点的数据。将使用潜在增长混合模型及其扩展来分析这三个目标。这项研究的结果与NINR的使命相关，因为它们将为改善症状管理战略和加强ESLD门诊患者及其照顾者的生命末期和姑息治疗奠定科学基础。

 DESCRIPTION (provided by applicant): End-stage liver disease (ESLD) is a life-limiting illness that leads inevitably to physical and psychological suffering and death except in the case of liver transplantation. Unfortunately, of the estimated 400,000 Americans affected by ESLD, most are not liver transplant candidates and fewer than 6,700 are transplanted each year. The population with ESLD will continue to grow with a shift over the next two decades from viral hepatitis related mortality to increasing mortality from fatty liver disease. Although patients dyig from ESLD may have experiences that resemble those of people with other terminal illnesses, much less is known about the symptom burden and archetypical illness trajectory of ESLD. What is known is that patients with ESLD facing death rarely receive appropriate symptom management and palliative care. Thus, the burden of their complex care is left to caregivers who themselves are at risk for reduced quality of life (QOL) and increased mortality. Such known consequences for caregivers may be intensified in ESLD due to aspects specific to liver disease (e.g., substance abuse, often associated with family conflict). Unfortunately, very little s known about how physical and psychological symptom burden changes over time in patients with ESLD and their caregivers, and about the impact of these changes on their QOL. There is a critical need to identify subgroups of patients and caregivers who would benefit most from early palliative care interventions specifically tailored to ESLD. The long-term goal of this program of research is to design such interventions to minimize symptom burden and improve QOL for patient-caregiver dyads as patients with ESLD approach the end of life. The goals of the proposed study are to 1) identify patient and caregiver subgroups that have distinct trajectories of change in symptoms, and quantify the association of these trajectories with patient and caregiver outcomes; and 2) identify different types of patient-caregiver dyads who may need early palliative care intervention. The proposed dyadic study uses a longitudinal prospective descriptive design and has three primary aims: Aim 1 is to identify trajectories of change in physical and psychological symptom burden in adults with ESLD; aim 2 is to identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and aim 3 is to determine patterns and predictors of types of patient-caregiver dyads that would benefit from early tailored palliative care interventions. A sample of 240 outpatients with ESLD and 240 caregivers will be enrolled through liver clinics at two hospitals. Data will be collected t five time points over a 12-month period using standardized instruments completed during in-person and telephone interviews. Latent growth mixture modeling and extensions thereof will be used to analyze the three aims. Findings from the study have relevance to the mission of NINR as they will build the scientific foundation to improve symptom management strategies and enhance end of life and palliative care for outpatients with ESLD and their caregivers.