Patient centered care for individuals with advanced liver disease

背景：确保患有大病的退伍军人得到以患者为中心的护理是根本目标 退伍军人事务部。晚期肝病(AdvLD)是一种严重的疾病，对退伍军人和 以健康状况下降、症状增加和频繁住院为特征。近期以患者为中心 癌症等其他疾病的护理模式促进了支持性和姑息性与 治愈性护理。这些型号可以提高质量，甚至延长寿命。先期学习障碍综合护理是必不可少的 因为它可以减少并发症，保持功能和福祉，甚至可能延长生命。 目标：以患者为中心的综合AdvLD护理模式由于特定的原因发展缓慢 知识鸿沟。首先，缺乏对疾病严重程度和进展的准确和完整的了解。 其次，没有研究表明退伍军人的经历和对他们的严重程度的理解，或者 各种疾病严重程度的护理目标。第三，人们对临床医生的经验知之甚少， 期望，以及提供预科护理的可察觉障碍。我们建议的研究，近距离进行 与AdvLD患者、护理人员、临床医生和临床操作合作伙伴合作，将使用多个 填补这些空白的方法方法对于发展对先期LD的综合护理至关重要。我们的具体目标是： (1)开发风险预测模型，将患者分成不同风险的组，以预测关键的前LD结果； (2)描述患者和照顾者的先期护理经验和目标，包括对疾病的看法 严重性、对所需风险信息的数量和类型的偏好以及预期的健康结果目标； 以及(3)确定临床医生对以患者为中心的先期护理的机会和障碍的看法。 方法：对于目标1，我们将对退伍军人进行一项全国性的回顾性队列研究，研究对象为 弗吉尼亚州在2011至2015年间。我们将在退伍军人管理局的公司数据中使用先前存在的管理和临床数据 将肝脏严重程度指数与社会人口学(年龄、性别、无家可归)、临床 (身心健康共病、饮酒)和医疗资源使用(住院、 急诊室就诊)因素，以提供三种以患者为中心的结果的风险类别估计： 发展为AdvLD并发症，需要与AdvLD相关的住院治疗，以及总体死亡率。要实现 目标2，我们将对60名患有AdvLD的患者和30名照顾者进行深入的定性访谈，在 3多种退伍军人管理局设施。参与者将按风险级别(例如，低、中或高风险)进行分层 由AdvLD特有的并发症造成的死亡率)。为了达到目标3，我们将进行深入的定性访谈 有30名临床医生参与了对先期LD患者的直接护理。采访将考察他们在 传达风险和制定治疗计划；对他们和他们的患者在治疗中所扮演角色的看法 规划；以及提供与患者健康结果目标一致的护理的障碍和促进者。 意义：这些目标加在一起将产生对当前临床护理有直接影响的产品 以及为发展以患者为中心的、综合的 确保及时、支持性和姑息性护理与患者偏好一致的先期护理方法 以及《退伍军人法》规定的当代先期保健背景下的健康结果目标。

Background: Ensuring that Veterans with serious illness receive patient-centered care is a fundamental goal of VA. Advanced liver disease (AdvLD) is a serious illness that disproportionately affects Veterans and is characterized by declining health, increasing symptoms and frequent hospitalizations. Recent patient-centered models of care in other conditions, like cancer, have promoted early integration of supportive and palliative with curative care. These models can improve quality and even length of life. Integrated care in AdvLD is essential because it can reduce complications, maintain both function and well-being, and may even prolong life. Objectives: Patient-centered models of integrated AdvLD care have been slow to develop due to specific knowledge gaps. First, precise and complete understanding of disease severity and progression is lacking. Second, no studies exist that characterize Veterans' experiences and understanding of their AdvLD severity, or goals of care across the spectrum of disease severity. Third, little is known about clinicians' experiences, expectations, and perceived barriers to delivering AdvLD care. Our proposed study, conducted in close collaboration with AdvLD patients, caregivers, clinicians and clinical operations partners, will use a multi- method approach to fill these gaps so crucial to developing integrated care for AdvLD. Our specific aims are: (1) to develop risk prediction models to stratify patients into groups at different risks for key AdvLD outcomes; (2) to describe patient and caregiver experiences and goals of AdvLD care, including perceptions of illness severity, preferences for the amount and type of risk information desired, and expected health outcome goals; and (3) to identify clinicians' perceptions of opportunities and barriers to patient-centered AdvLD care. Methods: For Aim 1, we will conduct a national retrospective cohort study of Veterans with AdvLD seen in the VA between 2011 and 2015. We will use pre-existing administrative and clinical data in VA Corporate Data Warehouse to combine liver severity indices with sociodemographic (age, gender, homelessness), clinical (physical and mental health comorbidity, alcohol use), and healthcare resource use (hospitalization, emergency room visits) factors to provide risk category estimates for three patient-centered outcomes: risk of developing AdvLD complications, requiring AdvLD related hospitalizations, and overall mortality. To achieve Aim 2, we will conduct in-depth qualitative interviews with 60 patients who have AdvLD, and 30 caregivers, at 3 diverse VA facilities. Participants will be stratified by risk strata (e.g., low, intermediate or high risk of mortality from AdvLD-specific complications). To achieve Aim 3, we will conduct in-depth qualitative interviews with 30 clinicians involved in direct care of patients with AdvLD. Interviews will examine their experiences in communicating risk and making treatment plans; perceptions of their and their patients' roles in treatment planning; and barriers to and facilitators of providing care aligned with patients' health outcome goals. Significance: Together, these aims will yield products that have direct impact on current clinical care of advanced liver disease as well as provide the foundation for developing a patient-centered, integrated approach to AdvLD care that ensures timely supportive and palliative care consistent with patients' preferences and health outcome goals within the context of contemporary AdvLD care as provided in the VA.