Why is it important to assess health-related quality of life in cardiac patients?
We need to know what any patient thinks about what has been done to or for him or her. Helping people to live longer and live better are principal health care goals with an emphasis on outcomes that people notice and care about such as survival, symptoms, functional status, and health-related quality of life [HRQL]. Patient-Reported Outcomes [PROs] are those outcomes reported directly by patients themselves and not interpreted by an observer. These reports are increasingly being used to inform patient-centered care, clinical decision-making, reimbursement, and health policy decisions. Examples of PROs include health status, satisfaction with care, and symptoms as well as HRQL. A central goal of cardiovascular care is to improve cardiovascular health and there is evidence demonstrating that improved health status and HRQL are strong, independent predictors of health outcomes such as mortality, cardiovascular events, hospitalisation, and costs of care in patients with cardiac disease.
How can patient-reported outcomes be of benefit in a research study or in clinical care?
Major benefits that heart disease-specific PROs provide the researcher and the clinician, as well as the individual cardiac patient, are unique views into the patient’s own perspective of the impact of their disease and of interventions such as disease management, revascularization, and cardiac rehabilitation. As such, PROs like HRQL are considered as being complementary to standardised objective physical, laboratory, and diagnostic tests in both research studies and clinical care. Research studies and clinical trials in patients with cardiac disease tend to focus on quantifying the impact of the disease as well as testing the benefits of one intervention over another. Assessment and evaluation of HRQL as an outcome measure provides researchers a unique and important patient-reported perspective of both the positive and negative impact of the cardiac disease itself and established or new treatments. Based to a considerable degree on the results of research studies, clinical care tends to focus on single patients. Monitoring HRQL, i.e., both assessment and evaluation, is important as an outcome measure in routine clinical care providing valuable information which allows the clinician to consider whether or not to make treatment changes as well as being a quality of care and audit performance measure.
How did you develop the HeartQoL questionnaire?
The major goal of the HeartQoL Project, initiated in 2002 with support from the European Society of Cardiology and the Working Group on Cardiac Rehabilitation & Exercise Physiology - now known as the European Association of Preventive Cardiology - was to develop a single valid and reliable core ischemic heart disease-specific HRQL questionnaire, which is now known as the HeartQoL questionnaire.
Volunteer investigators, predominantly members of the European Association of Preventive Cardiology, from 22 different countries world-wide [with 15 different languages] agreed to recruit patients with ischaemic heart disease, specifically angina, myocardial infarction, and heart failure. The treating physicians referred all patients who provided informed consent and then completed a battery of questionnaires. The battery included the generic SF-36 health survey, the Hospital Anxiety and Depression Scale, the Global Mood Scale (GMS), the Type D personality scale, and three IHD-specific HRQL questionnaires, the Seattle Angina Questionnaire, the MacNew questionnaire, and the Minnesota Living with Heart Failure questionnaire. All physical, mental, and social domain items in the three IHD-specific questionnaires were considered as potential candidate items for the HeartQoL questionnaire. The clinical impact method was used identifying 26 items considered by patients to be the most bothersome. Mokken scaling, a hierarchical scaling method, was then used forming the 14-item HeartQoL questionnaire with two subscales, a 10-item physical subscale and a 4-item emotional subscale. The 14-item questionnaire was demonstrated to be valid [convergent and discriminant validity] and reliable [internal consistency reliability] in the 6,384 patients with IHD and in the 2,111 patients with angina, the 2,351 patients with MI, and the 1,922 patients with heart failure. Responsiveness with percutaneous coronary intervention [n=398] and cardiac rehabilitation [n=383] was demonstrated in an independent sample of 730 patients with angina, myocardial infarction, and heart failure. The HeartQoL questionnaire has since been validated in 7,449 patients with coronary heart disease in the EuroAspire IV survey and in Danish patients with atrial fibrillation/flutter [n=426] or an implantable cardioverter defibrillator [n=358].
How is it different from other ischaemic heart disease health-related quality of life questionnaires?
The major difference between the 14-item HeartQoL and other ischaemic heart disease HRQL questionnaires, except for the MacNew questionnaire, is that the HeartQoL has been validated in each of the three major ischaemic heart disease diagnoses, angina, myocardial infarction, and heart failure. The MacNew has also been validated in patients with angina, myocardial infarction, and heart failure but is longer with 27 items.
Who can use HeartQoL?
Licenses are available for validation studies, national audits, research projects (standard license), and industry sponsored / commercial research.
More information about HeartQoL
For enquiries and the license application, please visit the HeartQoL webpage.