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Description
Cardiovascular diseases are the leading cause of death in Europe, being responsible for 46% of all fatalities. In Romania, cardiovascular diseases is causing 60% of deaths annually through ischemic heart disease and stroke. Mortality in these conditions in Romania is about 13 deaths per thousand inhabitants, compared to 10 deaths in the EU (2015) which puts Romania in first place among European countries. Cardiovascular diseases related costs are among the highest in all Europe, and they will intensify, given the upward trend in associated mortality. European Commission and World Health Organization estimate that more than four million deaths will be caused by cardiovascular diseases by 2030. Medical registries offer real world data about subsets of patients with specific diseases. Their utility both for public health and epidemiological research and for clinical practice is indisputable. Registries are vital in evaluating the impact a certain disease has on certain populations and in estimating the economic impact on society.
The project aim is to create a cardiac insufficiency registry in cardiovascular diseases and develop a risk model to identify the predictors of heart failure development in long-term acute myocardial infarction survivors. The project will be implemented in partnership with Haukeland University Hospital and University Hospital of North Norway Tromsø and will support the establishment of a cardiac insufficiency registry based on the Norwegian registry in cardiovascular diseases and develop a risk model that will identify and influence the population at risk with an objective to reduce the burden of cardiovascular diseases. The project will also increase the survival rate of patients who have suffered an acute myocardial infarction by acquisition of medical equipment, by training professional medical staff and by identifying and promoting a proactive therapeutic approach towards patients at risk of heart failure.
Summary of project results
Cardiovascular diseases (CVD) are the leading cause of mortality in Europe, accounting for 46% of all deaths. In Romania, CVDs account for 60% of all annual deaths, based on ischemic heart disease and ischemic stroke. Under these conditions, mortality in Romania is 13 deaths/1000 inhabitants, compared to 10 deaths in the European Union (2015), which places Romania in first place among European countries. The costs related to CVD are among the highest in Europe and will increase, given the upward trend in associated mortality. The European Commission and the World Health Organization estimate that over 4 million deaths will be caused by CVD in 2030.
In Romania, heart failure is responsible for 40 deaths/100,000 inhabitants. This value is double that recorded in other countries of the European Union. Most European countries run prevention and early diagnosis programs for heart failure. It is estimated that 4.7% of Romanian citizens over 35 years of age (560,000 people) suffer from heart failure. Every hour, five new cases of heart failure are diagnosed (45,000 new cases/year). Ischemic heart disease and acute myocardial infarction are the main determinants of heart failure.
In total, 14,400 years of life are lost annually due to heart failure. Most patients with heart failure are discharged home. Due to the underdevelopment of cardiac rehabilitation programs, rehospitalizations are frequent, significantly increasing the costs to the health system. Approximately 344,000 patients are hospitalized annually with a diagnosis of heart failure. 7.7% of them will die in the hospital. Regarding survivors, 15% of them will be readmitted with the same diagnosis within the first 30 days after initial discharge.
Medical registries are collections of secondary data (minimum data set), which refer to patients with a specific diagnosis, pathology or procedure (list of reportable diseases), being much less complex than electronic medical records. Their usefulness for public health and medical practice is indispensable. Medical registries are essential for assessing the quality of medical services and their economic impact.
Thus, they have a key role in informing clinicians and policy makers. Medical personnel will obtain more data on the occurrence of a specific pathology and its prognosis, subsequently being able to make informed decisions regarding treatment. Policy makers will obtain information on the geographical distribution of diseases and gender inequalities, so that they can plan targeted interventions on certain population segments. For the specific case of cardiology, registries represent the necessary framework for the application of intensive secondary prevention measures.
The development of medical registries represents a strategic direction, as stated in the National Health Strategy 2014-2020, so that the collection and analysis of quality data allows for informed, evidence-based decisions.
In addition to patients, the data obtained will benefit doctors, nurses, patient organizations, medical technology companies, insurers and payers, authorities and political decision-makers.
The proposed registry follows survivors of an acute myocardial infarction from two perspectives.
The first assesses patients for classical and newly discovered cardiovascular risk factors, such as periodontal disease and inflammation, as well as for the availability and importance of secondary prevention measures. The second aims to define predictors of left ventricular remodeling and to create a risk model for early identification of patients at risk for developing heart failure.
Early detection of left ventricular remodeling and predictors of late-onset heart failure are important, since their prevention and treatment can improve prognosis and event-free survival after acute myocardial infarction. In fact, some of the predictors of left ventricular remodeling overlap with secondary prevention measures, as clearly demonstrated by the Korean Acute Myocardial Infarction Registry. In the aforementioned registry, statin use was independently associated with recovery of left ventricular systolic function in post-acute myocardial infarction survivors.
The proposed registry is inspired by two important Swedish registries: The Register of Information and Knowledge about Swedish Heart Intensive Care Admissions (RIKS-HIA) and The Registry of Secondary Preventive Care after Cardiac Infarction (SEPHIA). It should be noted that RIKS-HIA has supported the implementation of new therapeutic strategies in acute myocardial infarction and contributed to a halving of 30-day mortality. In addition, it has provided an additional 1.7-2.6 years of survival after acute myocardial infarction.
The proposed registry combines ideas from RIKS-HIA, SEPHIA and the Korean Acute Myocardial Infarction Registry. This registry will generate a comprehensive database consisting of information collected in the acute setting, data on classic and newly discovered cardiovascular risk factors, both for atherosclerosis and left ventricular remodeling, as well as essential data on the implementation of secondary prevention measures. Therefore, it will generate a long-term follow-up program for post-acute myocardial infarction survivors.
Medical registries provide real data on subsets of patients with certain pathologies.
Their usefulness is indispensable, both for public health, but also for epidemiological research and clinical practice. Registries are vital in assessing the impact that a certain pathology has on a certain population and in estimating the costs it involves. Therefore, registries lead to improved clinical and public health decisions.
For the political environment, registries provide information on the geographical distribution of certain pathologies, on inequalities between genders or between different segments of the population and can help to implement targeted, specific actions.
The development of medical registries is an important part of the National Health Strategy 2014-2020. Improving data collection and analysis of information quality will contribute to more effective, evidence-based decisions. The benefit concerns both patients and doctors, nurses, non-governmental organizations, medical technology companies, insurance companies and policymakers.
The project will contribute to improving the diagnosis, treatment and monitoring of patients with cardiovascular diseases, will reduce inequalities in access to medical services and will have a direct contribution to achieving the goals of the National Health Strategy 2014-2020.
However, the main purpose of the registry is to support the health system in its attempt to provide evidence-based preventive measures and specific treatments for a given pathology. A registry provides feedback on the activity of medical personnel and generates the possibility of comparisons regarding treatments and their results, as well as comparisons between different medical service providers. A quality national medical registry contains person-centered details regarding a given pathology, the actions taken, the results and long-term follow-up data for each of the included patients. National registries are certified by the National Quality Assurance Group and the Romanian Society of Cardiology.
In Romania, there are large discrepancies regarding education, resources, access and addressability to health services, between different population segments. Moreover, in certain historical regions, risk factors differ significantly from those present in the general population. The same is true when comparing Romania with the rest of Europe. In this regard, a strategy that increases awareness, identifies and stratifies the population according to individual risks, improves addressability and access to quality health services and facilitates long-term follow-up is indispensable.
Cardiology represents a key point in the National Health Strategy 2014-2020, cardiovascular diseases being the main cause of death in the country. Increasing awareness and diagnostic and treatment capacities can lead to an improvement in survival rates.
Regarding the European Public Health Challenges Programme, the project contributes to the achievement of objective I - “Improving policies and services for disease prevention”.
The activities and results of the project are:
Activity I - Development of the heart failure registry. In this activity, the registry methodology was developed in close cooperation with the Norwegian partners (architecture, data collection standards, etc.), the IT platform hosting the registry was developed
Results:
- Development of the post-infarction heart failure registry
- 1120 patients enrolled in Cluj-Napoca
- 736 patients enrolled in Timisoara
- 115 patients enrolled in Oradea
Activity II - Development of a risk model for identifying predictors of heart failure and increasing long-term survival after acute myocardial infarction. This activity involved the acquisition, delivery, installation of the necessary medical equipment, namely MRI, 3 echocardiographs, mechanical circulatory support devices for data collection and training of medical personnel. Data were collected and recorded, analysis of the collected data and development of the risk model for predicting left ventricular remodeling after acute myocardial infarction. Methods for secondary prevention of coronary atherosclerosis were implemented,
Results:
- 1 risk model for identifying predictors of heart failure and increasing long-term survival after acute myocardial infarction
- Acquisition of MRI, 3 echocardiographs, PulseCath iVAC 21 system
Activity III: Development of the necessary legislation and guidelines for the implementation, support and expansion of the registry at national level.
Within this activity, a legislative proposal was developed and submitted for consultation and approval to the Minister of Health. For this purpose, 3 workshops were organized, attended by people from each beneficiary center, Cluj-Napoca, Timisoara, Oradea, as well as other involved people, with the aim of finalizing the legislative proposal.
Results:
- 1 legislative proposal
Activity IV: Advertising and communication
Activity 4.1: Development of promotional materials
Promotional materials were created in accordance with the visual identity of the funding program,
The website dedicated to the project that respects the visual identity of the funding program. Press conferences were organized for the launch and closure of the project, organized by the project promoter with the participation of representatives of partner hospitals, both from Romania and Norway.
Results:
- 2 conferences with 2 press statements
- 1 website created
- -promotional materials
Through the actions carried out, the project contributed to improving policies and services for disease prevention by creating the Heart Failure Registry. The Heart Failure Registry was developed based on the Norwegian cardiovascular disease registries. A risk model was also created with the help of which the precursors of heart failure will be identified. This project will increase survival after acute myocardial infarction, respectively as a result of the acquisition of medical equipment, through the training of medical personnel, by identifying and promoting an immediate therapeutic attitude in patients at risk of heart failure.