Mechanical circulatory support: Measures of adjustment and quality of life

机械循环支持：调整措施和生活质量

• 批准号: 9892884
• 负责人: KATHLEEN L GRADY
• 金额: $ 63.33万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-03-07 至 2023-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9892884
• 关键词: Activities of Daily Living; Adverse event; Age; American Heart Association; Applications Grants; Benefits and Risks; Caregiver support; Clinical; Computers; Data Collection; Destinations; Development; Devices; Diagnosis; Dimensions; Disease; Evaluation; Factor Analysis; Family; Feedback; Funding; Future; Goals; Grant; Health Personnel; Healthcare; Heart; Heart Transplantation; Heart failure; Hemorrhage; Home environment; Hospitalization; Hospitals; Implant; Individual; Infection; Length; Libraries; Location; Measurement; Measures; Mechanics; Medical; Methods; Modeling; Operative Surgical Procedures; Outcome; Paper; Patient Self-Report; Patient-Centered Care; Patients; Physical Function; Power Sources; Property; Provider; Psychometrics; Quality of life; Recommendation; Recreation; Reporting; Research; Research Design; Resources; Respondent; Safety; Science; Self Care; Self Efficacy; Site; Sterile coverings; Symptoms; System; Technology; Testing; Training Support; Transplantation; Water; Work; adverse event risk; blood pump; caregiver education; clinical practice; design; experience; health related quality of life; hospital readmission; implantable device; implantation; improved; individual patient; instrument; mobile application; point of care; public health relevance; response; satisfaction; standard measure; stroke risk; theories; tool; usability; ventricular assist device

 DESCRIPTION (provided by applicant): There is a critical need to develop better measures to assess adjustment to mechanical circulatory support (MCS) and health-related quality of life (HRQOL) because the impact of this therapy on patients' lives is profound. MCS devices are implanted surgically in patients with advanced heart failure and help the heart pump blood throughout the body. After discharge from the hospital, patients manage and troubleshoot their MCS devices while returning, as best they can, to usual activities of daily living (e.g., home and family responsibilities, work, and recreation). Benefits of MCS include longer survival (as compared to medical management of advanced heart failure), reduced heart failure symptoms, and improved physical function. Device-related complications (including bleeding, infection, device malfunction, and stroke) are risks of MCS implantation. As MCS technology evolves, survival is improving and the risk of adverse events is decreasing. However, future recommendations on the advisability of this expensive technology will depend not only on survivability and the risk of adverse events, but also on other outcomes, such as adjustment to MCS and HRQOL, which are less well defined. Importantly, currently available HRQOL instruments, which are generic or designed for heart failure or other illnesses, do not address many of the issues of concern and unique burdens of MCS on patients' daily lives. Currently, 50,000 to 100,ooo patients are diagnosed with advanced heart failure annually. Given the limited availability of heart transplantation, advanced heart failure patients may be offered MCS as a permanent implant (i.e., destination therapy). We propose to develop an MCS-specific measurement system, which we will refer to as Mechanical Circulatory Support: Adjustment and Quality of Life (MCS A-QOL). Our study design will focus on development and psychometric testing of our MCS A-QOL measurement system and evaluation of our conceptual model, followed by an exploration of usability of our measures (via a mobile app) by patients and providers. With development of a measurement system, our research will advance the field of MCS in patients with advanced heart failure. Use of our valid and responsive MCS A-QOL measures will contribute significantly to more clearly defining the benefits and risks of this evolving technology as compared with medical therapy or other strategies. Thus, "survival" will become more meaningful, as MCS A-QOL is incorporated into our understanding of risks and benefits.



项目成果

Validity of Patient-Reported Outcomes Measurement Information System Physical, Mental, and Social Health Measures After Left Ventricular Assist Device Implantation and Implications for Patient Care.

• DOI: 10.1161/circoutcomes.121.008690
• 发表时间: 2023-03
• 期刊: CIRCULATION-CARDIOVASCULAR QUALITY AND OUTCOMES
• 影响因子: 6.9
• 作者: Hahn, Elizabeth A.;Walsh, Mary N.;Allen, Larry A.;Lee, Christopher S.;Denfeld, Quin E.;Teuteberg, Jeffrey J.;Beiser, David G.;McIlvennan, Colleen K.;Lindenfeld, JoAnn;Klein, Liviu;Adler, Eric D.;Stehlik, Josef;Ruo, Bernice;Bedjeti, Katy;Cummings, Peter D.;Vela, Alyssa M.;Grady, Kathleen L.
• 通讯作者: Grady, Kathleen L.

PROMIS: Physical, Mental and Social Health Outcomes Improve From Before to Early After LVAD Implant: Findings From the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life (MCS A-QOL) Study.

PROMIS：从 LVAD 植入前到植入后早期，身体、心理和社会健康结果均有所改善：机械循环支持的发现：调整和生活质量的测量 (MCS A-QOL) 研究。

• DOI: 10.1016/j.cardfail.2023.03.013
• 发表时间: 2023
• 期刊: Journal of cardiac failure
• 影响因子: 6
• 作者: Hahn,ElizabethA;Allen,LarryA;Lee,ChristopherS;Denfeld,QuinE;Stehlik,Josef;Cella,David;Lindenfeld,Joann;Teuteberg,JeffreyJ;McIlvennan,ColleenK;Kiernan,MichaelS;Beiser,DavidG;Walsh,MaryN;Adler,EricD;Ruo,Bernice;Kirklin,
• 通讯作者: Kirklin,

Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study.

• DOI: 10.1007/s11136-022-03111-4
• 发表时间: 2022-08
• 期刊: QUALITY OF LIFE RESEARCH
• 影响因子: 3.5
• 作者: Carroll, Allison J.;Hahn, Elizabeth A.;Grady, Kathleen L.
• 通讯作者: Grady, Kathleen L.

Novel measures to assess ventricular assist device patient-reported outcomes: Findings from the MCS A-QOL study.

评估心室辅助装置患者报告结果的新方法：MCS A-QOL 研究的结果。

• DOI: 10.1016/j.healun.2023.08.007
• 发表时间: 2024
• 期刊: The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation
• 作者: Grady,KathleenL;Kallen,MichaelA;Beiser,DavidG;Lindenfeld,JoAnn;Teuteberg,Jeffrey;Allen,LarryA;McIlvennan,ColleenK;Rich,Jonathan;Yancy,Clyde;Lee,ChristopherS;Denfeld,QuinE;Kiernan,Michael;Walsh,MaryNorine;Adler,Eric;Ruo,
• 通讯作者: Ruo,