Patient centered care for individuals with advanced liver disease

背景：确保患有严重疾病的退伍军人获得以患者为中心的护理是一个基本目标 的VA。晚期肝病（AdvLD）是一种严重的疾病，不成比例地影响退伍军人， 其特征是健康状况下降、症状增加和频繁住院。近期以患者为中心 在其他情况下的护理模式，如癌症，促进了支持性和姑息性的早期整合， 治疗护理。这些模型可以提高质量甚至寿命。AdvLD的综合护理至关重要 因为它可以减少并发症，保持功能和健康，甚至可以延长寿命。 目的：由于特定的原因，以患者为中心的综合AdvLD护理模型开发缓慢。 知识差距。首先，缺乏对疾病严重程度和进展的准确和完整的理解。 其次，没有研究描述退伍军人的经历和对他们的AdvLD严重程度的理解，或者 在整个疾病严重程度范围内的护理目标。第三，我们对临床医生的经验知之甚少， 期望和感知障碍提供AdvLD护理。我们建议的研究，在密切 与AdvLD患者，护理人员，临床医生和临床运营合作伙伴的合作，将使用多- 方法的方法，以填补这些差距，所以至关重要的发展综合护理的AdvLD。我们的具体目标是： (1)开发风险预测模型，将患者分为关键AdvLD结局的不同风险组; (2)描述患者和护理人员的经验和AdvLD护理的目标，包括对疾病的看法 严重程度、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AdvLD护理的机会和障碍的看法。 方法：为了实现目标1，我们将对在2011年12月至2013年12月期间观察到的患有AdvLD的退伍军人进行一项全国回顾性队列研究。 2011年至2015年。我们将使用VA Corporate Data中预先存在的管理和临床数据 将联合收割机肝脏严重程度指数与社会人口统计学（年龄、性别、无家可归）、临床 （身心健康并发症，酒精使用）和医疗保健资源使用（住院， 急诊室就诊）因素，以提供三种以患者为中心的结局的风险类别估计： 发生AdvLD并发症、需要AdvLD相关住院治疗和总体死亡率。实现 目标2，我们将对60名AdvLD患者和30名护理人员进行深入的定性访谈， 3个不同的VA设施。参与者将按风险分层（例如，低、中或高风险 AdvLD特异性并发症的死亡率）。为了实现目标3，我们将进行深入的定性访谈 30名临床医生参与了AdvLD患者的直接护理。采访将考察他们在以下方面的经历： 沟通风险和制定治疗计划;他们和他们的病人在治疗中的角色的看法 计划;以及提供与患者健康结果目标一致的护理的障碍和促进因素。 意义：这些目标将共同产生对当前临床护理有直接影响的产品， 晚期肝病以及为发展以患者为中心的综合性 确保与患者偏好一致的及时支持性和姑息治疗的AdvLD治疗方法 以及VA中提供的当代AdvLD护理背景下的健康结局目标。

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.