Patient centered care for individuals with advanced liver disease

背景：确保患有严重疾病的退伍军人接受以患者为中心的护理是一个基本目标 弗吉尼亚州。晚期肝病 (AdvLD) 是一种严重疾病，对退伍军人影响尤为严重， 其特点是健康状况恶化、症状增加和频繁住院。最近以患者为中心 其他疾病（如癌症）的护理模式促进了支持性和姑息性治疗的早期整合 治疗护理。这些模型可以提高质量，甚至延长使用寿命。 AdvLD 的综合护理至关重要 因为它可以减少并发症，维持功能和健康，甚至可以延长寿命。 目标：由于具体原因，以患者为中心的 AdvLD 综合护理模式发展缓慢。 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了解。 其次，没有研究能够描述退伍军人的经历以及对其 AdvLD 严重程度的理解，或者 跨疾病严重程度的护理目标。第三，对临床医生的经验知之甚少， 期望以及提供 AdvLD 护理的感知障碍。我们提出的研究是密切进行的 与 AdvLD 患者、护理人员、临床医生和临床运营合作伙伴合作，将使用多 填补这些空白的方法对于发展 AdvLD 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，将患者分为不同风险组，以获得关键的 AdvLD 结果； (2) 描述患者和护理人员的 AdvLD 护理经历和目标，包括对疾病的看法 严重程度、对所需风险信息数量和类型的偏好以及预期健康结果目标； (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：对于目标 1，我们将对患有 AdvLD 的退伍军人进行一项全国回顾性队列研究 2011 年至 2015 年间的 VA。我们将使用 VA 公司数据中预先存在的管理和临床数据 将肝脏严重程度指数与社会人口统计（年龄、性别、无家可归）、临床相结合的仓库 (physical and mental health comorbidity, alcohol use), and healthcare resource use (hospitalization, 急诊室就诊）为三种以患者为中心的结果提供风险类别估计的因素： 发生 AdvLD 并发症、需要 AdvLD 相关住院治疗以及总体死亡率。达到 目标 2，我们将在以下地址对 60 名 AdvLD 患者和 30 名护理人员进行深入的定性访谈： 3 个多样化的 VA 设施。参与者将按风险等级进行分层（例如，低、中或高风险） AdvLD 特定并发症导致的死亡率）。为了实现目标3，我们将进行深入的定性访谈 30 名临床医生参与直接护理 AdvLD 患者。访谈将考察他们的经历 沟通风险并制定治疗计划；对他们及其患者在治疗中角色的看法 规划；提供符合患者健康结果目标的护理的障碍和促进因素。 意义：这些目标共同将产生对当前临床护理产生直接影响的产品 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.

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.