Patient centered care for individuals with advanced liver disease

以患者为中心的晚期肝病患者护理

• 批准号: 10186511
• 负责人: FASIHA KANWAL
• 金额: --
• 依托单位: MICHAEL E DEBAKEY VA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-05-01 至 2022-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10186511
• 关键词: Affect; Age; Alcohol consumption; Ascites; Caregivers; Caring; Categories; Child; Chronic Disease; Clinical; Clinical Data; Collaborations; Complement; Data; Diagnosis; Disease; Disease Outcome; Disease Progression; Drug usage; Elements; Emergency department visit; Encephalopathies; Enrollment; Ensure; Face; Foundations; Future; Gender; Goals; Health; Healthcare; Homelessness; Hospitalization; Individual; Intervention; Interview; Knowledge; Life; Liver; Liver diseases; Longevity; Malignant Neoplasms; Malignant neoplasm of liver; Medical; Mental Health; Methods; Modeling; Morbidity - disease rate; Needs Assessment; Outcome; Palliative Care; Participant; Patient Care; Patient Preferences; Patient-Centered Care; Patient-Focused Outcomes; Patients; Perception; Personal Satisfaction; Poverty; Prognosis; Race; Resources; Retrospective cohort study; Risk; Risk Estimate; Role; Sampling; Severities; Severity of illness; Shapes; Supportive care; Symptoms; Time; Transplantation; Veterans; Waiting Lists; alcohol use disorder; clinical care; cohort; comorbidity; data warehouse; design; direct patient care; expectation; experience; high risk; illness perceptions; improved; indexing; innovation; liver transplantation; mortality; mortality risk; operation; palliative; patient oriented; patient stratification; physical conditioning; preference; prognostic; prognostic model; psychosocial; risk prediction model; risk stratification; sociodemographics; treatment planning

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.

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，对退伍军人的影响不成比例 其特征是健康状况下降，症状增加和频繁住院治疗。最近以患者为中心 在癌症等其他情况下的护理模型已促进了与姑息治疗的早期整合 治疗护理。这些模型可以改善质量甚至寿命。 ADVLD中的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，甚至可以延长寿命。 目标：以患者为中心的综合ADVLD护理模型由于特定而开发缓慢 知识差距。首先，缺乏对疾病严重性和进展的准确和完全理解。 其次，没有研究表征退伍军人的经验和对他们的advld严重程度的理解或 跨疾病严重程度的护理目标。第三，关于临床医生的经历知之甚少， 期望，并认为提供ADVLD护理的障碍。我们提出的研究，近距离进行 与ADVLD患者，护理人员，临床医生和临床操作伙伴的合作，将使用多种多样 填补这些空白的方法方法对于为ADVLD开发综合护理至关重要。我们的具体目的是： （1）开发风险预测模型，以将患者分为主要的ADVLD结果风险不同； （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 严重性，所需风险信息的偏好和类型的偏好以及预期的健康结果目标； （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，我们将对在 VA在2011年至2015年之间。我们将在VA公司数据中使用先前存在的行政和临床数据 将肝脏严重性指数与社会人口统计学（年龄，性别，无家可归）相结合的仓库 （身体和心理健康合并症，饮酒）和医疗保健资源使用（住院， 急诊室访问）为以患者为中心的结果提供风险类别估计的因素： 发展ADVLD并发症，需要相关的住院和整体死亡率。实现 AIM 2，我们将对有60位患有ADVLD的患者和30名护理人员进行深入的定性访谈 3个不同的VA设施。参与者将按风险层进行分层（例如，低，中间或高风险 ADVLD特定并发症的死亡率）。为了实现目标3，我们将进行深入的定性访谈 有30位临床医生参与直接护理ADVLD患者。访谈将研究他们在 传达风险并制定治疗计划；对他们及其患者在治疗中的作用的看法 规划;以及提供与患者健康结果目标保持一致的护理的障碍和促进者。 意义：这些目标将共同产生直接影响当前临床护理的产品 晚期肝病，并为开发以患者为中心的，综合的基础 Advld Care的方法，确保及时支持和姑息治疗与患者的偏好一致 以及VA中提供的当代ADVLD护理的背景下的健康结果目标。

项目成果

Integrated Model for Patient-Centered Advanced Liver Disease Care.

• DOI: 10.1016/j.cgh.2019.07.043
• 发表时间: 2020-05
• 期刊: CLINICAL GASTROENTEROLOGY AND HEPATOLOGY
• 影响因子: 12.6
• 作者: Naik, Aanand D.;Arney, Jennifer;Clark, Jack A.;Martin, Lindsey A.;Paragraph, Anne M. Walling;Stevenson, Autumn;Smith, Donna;Asch, Steven M.;Kanwal, Fasiha
• 通讯作者: Kanwal, Fasiha

The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease.

• DOI: 10.1016/j.socscimed.2022.115113
• 发表时间: 2022-07
• 期刊: SOCIAL SCIENCE & MEDICINE
• 影响因子: 5.4
• 作者: Gray, Caroline;Arney, Jennifer;Clark, Jack A.;Walling, Anne M.;Kanwal, Fasiha;Naik, Aanand D.
• 通讯作者: Naik, Aanand D.

Prognosis conversations in advanced liver disease: A qualitative interview study with health professionals and patients.

• DOI: 10.1371/journal.pone.0263874
• 发表时间: 2022
• 期刊: PloS one
• 影响因子: 3.7
• 作者: Arney J;Gray C;Clark JA;Smith D;Swank A;Matlock DD;Melcher J;Kanwal F;Naik AD
• 通讯作者: Naik AD

Development, Validation, and Evaluation of a Simple Machine Learning Model to Predict Cirrhosis Mortality.

• DOI: 10.1001/jamanetworkopen.2020.23780
• 发表时间: 2020-11-02
• 期刊: JAMA network open
• 影响因子: 13.8
• 作者: Kanwal F;Taylor TJ;Kramer JR;Cao Y;Smith D;Gifford AL;El-Serag HB;Naik AD;Asch SM
• 通讯作者: Asch SM