Patient centered care for individuals with advanced liver disease
以患者为中心的晚期肝病患者护理
基本信息
- 批准号:10186511
- 负责人:
- 金额:--
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 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:
- 关键词:AffectAgeAlcohol consumptionAscitesCaregiversCaringCategoriesChildChronic DiseaseClinicalClinical DataCollaborationsComplementDataDiagnosisDiseaseDisease OutcomeDisease ProgressionDrug usageElementsEmergency department visitEncephalopathiesEnrollmentEnsureFaceFoundationsFutureGenderGoalsHealthHealthcareHomelessnessHospitalizationIndividualInterventionInterviewKnowledgeLifeLiverLiver diseasesLongevityMalignant NeoplasmsMalignant neoplasm of liverMedicalMental HealthMethodsModelingMorbidity - disease rateNeeds AssessmentOutcomePalliative CareParticipantPatient CarePatient PreferencesPatient-Centered CarePatient-Focused OutcomesPatientsPerceptionPersonal SatisfactionPovertyPrognosisRaceResourcesRetrospective cohort studyRiskRisk EstimateRoleSamplingSeveritiesSeverity of illnessShapesSupportive careSymptomsTimeTransplantationVeteransWaiting Listsalcohol use disorderclinical carecohortcomorbiditydata warehousedesigndirect patient careexpectationexperiencehigh riskillness perceptionsimprovedindexinginnovationliver transplantationmortalitymortality riskoperationpalliativepatient orientedpatient stratificationphysical conditioningpreferenceprognosticprognostic modelpsychosocialrisk prediction modelrisk stratificationsociodemographicstreatment planning
项目摘要
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。
项目成果
期刊论文数量(5)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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:
- 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:
- 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:
- 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.
对简单的机器学习模型的开发,验证和评估,以预测肝硬化死亡率。
- DOI:10.1001/jamanetworkopen.2020.23780
- 发表时间:2020-11-02
- 期刊:
- 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
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FASIHA KANWAL其他文献
FASIHA KANWAL的其他文献
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{{ truncateString('FASIHA KANWAL', 18)}}的其他基金
Clinical Validation Center for Hepatocellular Carcinoma
肝细胞癌临床验证中心
- 批准号:
10676320 - 财政年份:2022
- 资助金额:
-- - 项目类别:
Multi-level Evaluation of Racial/ethnic Disparities in Liver Disease Outcomes
肝病结果中种族/民族差异的多层次评估
- 批准号:
10374004 - 财政年份:2021
- 资助金额:
-- - 项目类别:
Multi-level Evaluation of Racial/ethnic Disparities in Liver Disease Outcomes
肝病结果中种族/民族差异的多层次评估
- 批准号:
10606494 - 财政年份:2021
- 资助金额:
-- - 项目类别:
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:
9701020 - 财政年份:2018
- 资助金额:
-- - 项目类别:
Risk Stratification for and Early Detection of Liver Cancer
肝癌的风险分层和早期发现
- 批准号:
10473708 - 财政年份:2018
- 资助金额:
-- - 项目类别:
Risk Stratification for and Early Detection of Liver Cancer
肝癌的风险分层和早期发现
- 批准号:
10239079 - 财政年份:2018
- 资助金额:
-- - 项目类别:
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照顾感染丙型肝炎病毒的女性退伍军人
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8596038 - 财政年份:2014
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