Emmanuel Lansac, Kevin M Veen, Andria Joseph, Paula Blancarte Jaber, Frieda Sossi, Zofia Das-Gupta, Suleman Aktaa, J Rafael Sádaba, Vinod H Thourani, Gry Dahle, Wilson Y Szeto, Faisal Bakaeen, Elena Aikawa, Frederick J Schoen, Evaldas Girdauskas, Aubrey Almeida, Andreas Zuckermann, Bart Meuris, John Stott, Jolanda Kluin, Ruchika Meel, Wil Woan, Daniel Colgan, Hani Jneid, Husam Balkhy, Molly Szerlip, Ourania Preventza, Pinak Shah, Vera H Rigolin, Silvana Medica, Philip Holmes, Marta Sitges, Philippe Pibarot, Erwan Donal, Rebecca T Hahn, Johanna J M Takkenberg
{"title":"The first International Consortium for Health Outcomes Measurement (ICHOM) standard dataset for reporting outcomes in heart valve disease: moving from device- to patient- centered outcomes.","authors":"Emmanuel Lansac, Kevin M Veen, Andria Joseph, Paula Blancarte Jaber, Frieda Sossi, Zofia Das-Gupta, Suleman Aktaa, J Rafael Sádaba, Vinod H Thourani, Gry Dahle, Wilson Y Szeto, Faisal Bakaeen, Elena Aikawa, Frederick J Schoen, Evaldas Girdauskas, Aubrey Almeida, Andreas Zuckermann, Bart Meuris, John Stott, Jolanda Kluin, Ruchika Meel, Wil Woan, Daniel Colgan, Hani Jneid, Husam Balkhy, Molly Szerlip, Ourania Preventza, Pinak Shah, Vera H Rigolin, Silvana Medica, Philip Holmes, Marta Sitges, Philippe Pibarot, Erwan Donal, Rebecca T Hahn, Johanna J M Takkenberg","doi":"10.1093/ehjqcco/qcae051","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Globally significant variation in treatment and course of heart valve disease (HVD) exists, and outcome measurement is procedure focused instead of patient focused. This article describes the development of a patient-related (International Consortium for Health Outcomes Measurement) standard set of outcomes and case mix to be measured in patients with HVD.</p><p><strong>Methods: </strong>A multisociety working group was formed that included patient representatives and representatives from scientific cardiology and cardiothoracic surgery societies that publish current guidelines for HVD. The standard set was developed to monitor the patient's journey from diagnosis to treatment with either a surgical or transcatheter procedure. Candidate clinical and patient-reported outcome measures (PROMs) and case mix were identified through benchmark analyses and systematic reviews. Using an online modified Delphi process, the working group voted on final outcomes/case mix and corresponding definition.</p><p><strong>Results: </strong>Patients with aortic/mitral/tricuspid valve disease or root/ascending aorta >40 mm were included in the standard set. Patients entered the dataset when the diagnosis of HVD was established, allowing outcome measurement in the preprocedural, periprocedural, and postprocedural phases of patients' lives. The working group defined 5 outcome domains: vital status, patient-reported outcomes, progression of disease, cardiac function and durability, and complications of treatment. Subsequently, 16 outcome measures, including 2 patient-reported outcomes, were selected to be tracked in patients with HVD. Case-mix variables included demographic factors, demographic variables, echocardiographic variables, heart catheterization variables, and specific details on aortic/mitral/tricuspid valves and their specific interventions.</p><p><strong>Conclusions: </strong>Through a unique collaborative effort between patients and cardiology and cardiothoracic surgery societies, a standard set of measures for HVD was developed. This dataset focuses on outcome measurement regardless of treatment, moving from procedure- to patient-centered outcomes. Implementation of this dataset will facilitate global standardization of outcome measurement, allow meaningful comparison between health care systems and evaluation of clinical practice guidelines, and eventually improve patient care for those experiencing HVD worldwide.</p>","PeriodicalId":11869,"journal":{"name":"European Heart Journal - Quality of Care and Clinical Outcomes","volume":" ","pages":""},"PeriodicalIF":4.8000,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Heart Journal - Quality of Care and Clinical Outcomes","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/ehjqcco/qcae051","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CARDIAC & CARDIOVASCULAR SYSTEMS","Score":null,"Total":0}
The first International Consortium for Health Outcomes Measurement (ICHOM) standard dataset for reporting outcomes in heart valve disease: moving from device- to patient- centered outcomes.
Background: Globally significant variation in treatment and course of heart valve disease (HVD) exists, and outcome measurement is procedure focused instead of patient focused. This article describes the development of a patient-related (International Consortium for Health Outcomes Measurement) standard set of outcomes and case mix to be measured in patients with HVD.
Methods: A multisociety working group was formed that included patient representatives and representatives from scientific cardiology and cardiothoracic surgery societies that publish current guidelines for HVD. The standard set was developed to monitor the patient's journey from diagnosis to treatment with either a surgical or transcatheter procedure. Candidate clinical and patient-reported outcome measures (PROMs) and case mix were identified through benchmark analyses and systematic reviews. Using an online modified Delphi process, the working group voted on final outcomes/case mix and corresponding definition.
Results: Patients with aortic/mitral/tricuspid valve disease or root/ascending aorta >40 mm were included in the standard set. Patients entered the dataset when the diagnosis of HVD was established, allowing outcome measurement in the preprocedural, periprocedural, and postprocedural phases of patients' lives. The working group defined 5 outcome domains: vital status, patient-reported outcomes, progression of disease, cardiac function and durability, and complications of treatment. Subsequently, 16 outcome measures, including 2 patient-reported outcomes, were selected to be tracked in patients with HVD. Case-mix variables included demographic factors, demographic variables, echocardiographic variables, heart catheterization variables, and specific details on aortic/mitral/tricuspid valves and their specific interventions.
Conclusions: Through a unique collaborative effort between patients and cardiology and cardiothoracic surgery societies, a standard set of measures for HVD was developed. This dataset focuses on outcome measurement regardless of treatment, moving from procedure- to patient-centered outcomes. Implementation of this dataset will facilitate global standardization of outcome measurement, allow meaningful comparison between health care systems and evaluation of clinical practice guidelines, and eventually improve patient care for those experiencing HVD worldwide.
期刊介绍：
European Heart Journal - Quality of Care & Clinical Outcomes is an English language, peer-reviewed journal dedicated to publishing cardiovascular outcomes research. It serves as an official journal of the European Society of Cardiology and maintains a close alliance with the European Heart Health Institute. The journal disseminates original research and topical reviews contributed by health scientists globally, with a focus on the quality of care and its impact on cardiovascular outcomes at the hospital, national, and international levels. It provides a platform for presenting the most outstanding cardiovascular outcomes research to influence cardiovascular public health policy on a global scale. Additionally, the journal aims to motivate young investigators and foster the growth of the outcomes research community.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
