DALLAS, Feb. 17, 2025 — The International Consortium for Health Outcomes Measurement (ICHOM) has developed a globally inclusive standard dataset of 16 patient-centered outcome measures for people with heart valve disease, regardless of treatment (surgical or transcatheter procedure), according to a new report published today in the American Heart Association’s journal Circulation: Cardiovascular Quality & Outcomes.
The report, “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,” was a unique collaborative effort between patient representatives and representatives from several international cardiology and cardiothoracic surgery societies.
Highlights include:
- Due to the aging population and improvement in diagnostic strategies, the prevalence of heart valve disease is expected to double by 2040 and triple by 2060. As a result, it is estimated that the number of patients requiring heart valve interventions will increase significantly in the coming decades.
- Previous studies about heart valve disease have focused on procedural or device outcomes, and less on patient-centered and disease-related outcomes that are relevant to patients’ physical and mental well-being and quality of life.
- The standard dataset was developed to monitor the patient's disease progression and journey through the health care system, from diagnosis to treatment with either a surgical or transcatheter procedure. Patients with aortic/mitral/tricuspid valve disease or root/ascending aorta >40 mm were included as soon as they were diagnosed with heart valve disease.
- The multisociety working group defined five outcome domains: vital status, patient-reported outcomes, progression of the disease, cardiac function and durability, and complications of treatment.
- Consequently, 16 outcome measures were selected to be tracked in patients with heart valve disease, including: all-cause mortality, quality of life, mental health, impact on mental health and daily activities, hospitalization for heart failure, native valve dysfunction, cardiac symptoms, cardiac rhythm, left ventricular ejection fraction, endocarditis, valve thrombosis, bleeding event, stroke and thromboembolic event, operative complications, reoperation and post-intervention valve deterioration.
- The dataset suggests tracking clinic-reported outcome measures at six months within the first year after diagnosis and annually thereafter, and patient-reported outcomes annually, with more frequent tracking advised for patients who undergo either a surgical or transcatheter procedure.
- Implementation of this dataset will facilitate global standardization of outcome measurements and allow for meaningful comparison between health care systems, evaluation of clinical practice guidelines, and improvement of patient care for people experiencing heart valve disease worldwide.
The dataset was developed by a multisociety taskforce coordinated by the Heart Valve Society (HVS) including: the American Heart Association (AHA), the American College of Cardiology (ACC), the European Association for Cardio-Thoracic Surgery (EACTS), the European Society of Cardiology (ESC), the Society of Thoracic Surgeons (STS), the Australian & New Zealand Society of Cardiac & Thoracic Surgeons (ANZSCTS), the International Society for Applied Cardiovascular Biology (ISACB), the International Society for Minimally Invasive Cardiothoracic Surgery (ISMICS), the South African Heart Association (SHA), Heart Valve Voice and Global Heart Hub.
Writing group members and their disclosures are listed in the manuscript.
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