Advanced Heart Failure: Epidemiology and Outcomes

晚期心力衰竭：流行病学和结果

• 批准号: 10680429
• 负责人: Shannon Marie Dunlay
• 金额: $ 71.64万
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-08-15 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10680429
• 关键词: Activities of Daily Living; Address; Advanced Development; Affect; Caregivers; Caring; Case Mixes; Cessation of life; Characteristics; Chronic; Clinical; Clinical Research; Communities; Complex; Computational algorithm; Data; Data Science; Data Sources; Development; Diagnosis; Electronic Health Record; Environment; Epidemiology; Event; Family; Future; Geography; Goals; Healthcare; Healthcare Systems; Heart Transplantation; Heart failure; Hospitalization; Individual; Infrastructure; Infusion procedures; Intervention; Intervention Studies; Interview; Investigation; Knowledge; Life; Machine Learning; Medical; Medical Records; Methodology; Modeling; Morbidity - disease rate; Multiple Organ Failure; Myocardial dysfunction; Observational Study; Outcome; Palliative Care; Patient-Focused Outcomes; Patients; Performance; Population; Population Heterogeneity; Prevalence; Prognosis; Public Health; Public Health Applications Research; Qualitative Methods; Quality of life; Recurrence; Refractory; Refractory Disease; Resource Allocation; Risk; Sampling; Structure; Surveys; Symptoms; Syndrome; Techniques; Time; Treatment Protocols; Underserved Population; United States; Ventricular Function; acceptability and feasibility; burden of illness; cohort; computable phenotypes; design; disabling symptom; diverse data; end of life care; experience; functional disability; health care disparity; high risk; hospice environment; improved; mechanical circulatory support; mortality; novel; palliative; patient oriented; patient population; population based; programs; prospective; prototype; rural setting

PROJECT SUMMARY/ABSTRACT Advanced heart failure is characterized by progressive debilitating symptoms and repeated hospitalizations that degrade quality of life. There is no one criterion to diagnose advanced heart failure; the definition is complex and challenging to apply broadly to populations. As such, our knowledge of advanced heart failure is truncated and skewed as it is based on information from referral populations and convenience samples. Enhancing our understanding of the epidemiology, experiences, and outcomes of patients with advanced heart failure is critical to developing interventions to improve care and quality of life. To address these gaps in knowledge, this proposal leverages diverse data sources and novel applications of quantitative and qualitative methods to assess the epidemiology and outcomes of individuals with advanced heart failure. In Aim 1, we will apply an advanced heart failure definition to a geographically-defined population of individuals with heart failure under the auspices of the Rochester Epidemiology Project. We will determine the prevalence of advanced heart failure, examine the demographic and clinical features of the population, and evaluate the timing of its development and association with risk of outcomes. In Aim 2, we will use machine learning techniques to develop computer algorithms (computable phenotypes) to identify patients with advanced heart failure using electronic health record data. We will then leverage the infrastructure of the National Patient- Centered Clinical Research Network (PCORnet) to validate the performance of the computable phenotypes across diverse patient populations. This will enable the accurate and efficient identification of advanced HF for future applications. In Aim 3, we will use the computable phenotype developed in Aim 2 to prospectively identify individuals living with advanced HF. We will then assess their treatment and illness burdens using a combination of surveys and semi-structured qualitative interviews. This information will be used to inform the development of a palliative care intervention that is tailored to the needs of patients with advanced HF. We will assess the acceptability of the tailored palliative care intervention to stakeholders (patients, caregivers, clinicians). The results of these analyses will provide synergistic information to clarify the epidemiology, case mix, burdens, and outcomes of individuals with advanced heart failure. They will provide a prototype palliative care intervention tailored to decrease burden and improve quality of life in advanced heart failure. Finally, the computable phenotype developed can be used to identify patients with advanced HF for future quality improvement programs, observational studies, and interventional research.

项目摘要/摘要 晚期心力衰竭的特征是逐渐使人衰弱的症状和重复住院 这种降低生活质量。没有一个标准可以诊断晚期心力衰竭。定义是 复杂而充满挑战，可以广泛应用于人口。因此，我们对先进心力衰竭的了解是 截断并歪曲，因为它基于推荐人群和便利样本的信息。 增强我们对患有晚期患者的流行病学，经验和结果的理解 失败对于制定干预措施以改善护理和生活质量至关重要。解决这些差距 知识，该建议利用了定量和定性的各种数据源和新颖的应用 评估患有晚期心力衰竭个体的流行病学和结果的方法。 在AIM 1中，我们将对地理定义的个体进行先进的心力衰竭定义 在罗切斯特流行病学项目的主持下进行心力衰竭。我们将确定患病率 晚期心力衰竭，检查人群的人口统计和临床特征，并评估 其发展的时机和与结果风险的联系。在AIM 2中，我们将使用机器学习 开发计算机算法（可计算表型）以识别患有晚期心脏的患者的技术 使用电子健康记录数据的故障。然后，我们将利用国家患者的基础设施 - 中心临床研究网络（PCORNET）验证可计算表型的性能 在不同的患者人群中。这将使能够准确有效地识别高级HF 未来的应用。在AIM 3中，我们将使用AIM 2中开发的可计算表型来前瞻性 确定患有高级HF的人。然后，我们将使用A评估他们的治疗和疾病负担 调查和半结构化定性访谈的结合。此信息将用于告知 开发姑息治疗干预措施，该干预措施是根据晚期HF患者的需求量身定制的。我们将 评估对利益相关者（患者，照顾者， 临床医生）。 这些分析的结果将提供协同信息，以阐明流行病学，病例组合， 患有晚期心力衰竭的人的负担和结果。他们将提供原型姑息治疗 为了减轻负担和改善晚期心力衰竭的生活质量而定制的干预措施。最后， 开发的可计算表型可用于识别患有晚期HF的患者以确定未来质量 改进计划，观察研究和介入研究。

项目成果

Advanced Heart Failure Characteristics and Outcomes in Commercially Insured U.S. Adults.

有商业保险的美国成年人的晚期心力衰竭特征和结果。

• DOI: 10.1016/j.jchf.2023.06.029
• 发表时间: 2023
• 期刊: JACC. Heart failure
• 作者: Subramaniam,Anna;vanHouten,Holly;Redfield,MargaretM;Sangaralingham,LindseyR;Savitz,SamuelT;Glasgow,Amy;Schulte,PhillipJ;LeMond,LisaM;Dunlay,ShannonM
• 通讯作者: Dunlay,ShannonM

Investigating gender-based differential item functioning on the Kansas City Cardiomyopathy Questionnaire (KCCQ) using qualitative content analysis.

• DOI: 10.1007/s11136-022-03276-y
• 发表时间: 2023-03
• 期刊: QUALITY OF LIFE RESEARCH
• 影响因子: 3.5
• 作者: Coles, Theresa M.;Lucas, Nicole;McFatrich, Molly;Henke, Debra;Ridgeway, Jennifer L.;Behnken, Emma M.;Weinfurt, Kevin;Reeve, Bryce B.;Corneli, Amy;Dunlay, Shannon M.;Spertus, John A.;Lin, Li;Pina, Ileana L.;Bocell, Fraser D.;Tarver, Michelle E.;Dohse, Heidi;Saha, Anindita;Caldwell, Brittany
• 通讯作者: Caldwell, Brittany

Cardiovascular Events Among Survivors of Sepsis Hospitalization: A Retrospective Cohort Analysis.

• DOI: 10.1161/jaha.122.027813
• 发表时间: 2023-02-07
• 期刊: JOURNAL OF THE AMERICAN HEART ASSOCIATION
• 影响因子: 5.4
• 作者: Jentzer, Jacob C.;Lawler, Patrick R.;Van Houten, Holly K.;Yao, Xiaoxi;Kashani, Kianoush B.;Dunlay, Shannon M.
• 通讯作者: Dunlay, Shannon M.