HF prevalence increases with age, particularly after the age of 65, mainly due to the greater incidence of hypertension and myocardial infarction (MI) after this age and to increased survival of patients after MI.3 HF affects 1-2% of the world's population and 6-10% of those aged over 65.3,4 Worldwide, around 26 million adults suffer from HF, on a par with the 32 million with cancer and the 34 million with HIV/AIDS.3 The most recent projections indicate that its prevalence will rise by 25% by 2030.5

Episodes of decompensation frequently require visits to the emergency department and hospitalization or rehospitalization. In developed countries, HF accounts for 1-4% of all hospitalizations,3 and is the leading cause of admission in individuals aged over 65 in Europe and the USA.1 Around a quarter of these patients are rehospitalized within a month of discharge.4,6

Each hospitalization represents a further worsening of HF, contributing to the decline in the patient's clinical condition, until death results. In Europe, in-hospital mortality from HF is 7-9%,7 a higher figure than for MI.8 Mortality can reach 27% at six months after hospitalization for HF9 and 50% at 12 months in those admitted with cardiogenic shock.10 Over 50% of HF patients die within five years of diagnosis, which represents a lower survival rate than some types of cancer, including breast, prostate and colon cancer and leukemia.3,11

The economic burden of HF is considerable worldwide, accounting for 1-3% of health budgets in the USA and Europe, where it has the greatest economic impact of all diseases.3 In the USA, spending on HF is more than double that of spending on all cancers combined.12 Furthermore, the costs of hospitalizations are considerable, direct medical costs accounting for 68% of the total costs of HF in the USA and Europe.13

There is a high prevalence of cardiovascular risk factors in Portugal: 24% of the population are smokers14 and 27.5% have metabolic syndrome.15 The country has one of the highest rates of increase in prevalence of overweight and obesity in Europe (53% in those aged between 18 and 64).16 In addition, three million Portuguese have diabetes or impaired glucose metabolism.17 Hypertension affects 42% of adult Portuguese18 and there are around 12000 cases of MI every year.8

The overall prevalence of chronic HF in Portugal was estimated at 4.36% in the EPICA study (1998–2000), ranging from 1.36% in those aged 25-49 to 16.14% in those aged over 80.19 Bearing in mind the aging of the population over the last 20 years, these figures are now undoubtedly higher; on the basis of the prevalence in each age-group in the EPICA study and data from the 2011 census, there may now be as many as 380000 cases of HF in Portugal.20

A report by the Portuguese Directorate-General for Health (DGS), “Cerebral and Cardiovascular Disease in Numbers 2015”,8 cites a principal diagnosis of HF as the second leading source of hospital production, accounting in 2014 for 182512 days of hospitalization (1.9 times more than MI) and 18588 patients discharged after admission for decompensated HF. Mean hospital stay for HF was 9.8 days in 2014. HF is responsible for the highest in-hospital mortality of all cerebral and cardiovascular disease in the country, reaching 12.5%.8

In addition, HF is often presented as a secondary diagnosis in medical records, so the actual number of patients hospitalized for HF is higher than reported.21 According to a report from medical consultants IASIST Portugal, “Impact of hospitalization of chronic patients on the NHS”, the number of HF admissions rose by 33% between 2004 and 2012,22 but this number is probably an underestimate, in view of shortcomings in the coding of a diagnosis of HF.21 The rate of hospitalization for HF in 2009 was 27.9/100000 population, similar to that for diabetes (30.0/100000), asthma (29.5/100000) and chronic obstructive pulmonary disease (COPD) (29.4/100000), some of the major epidemics of the 21st century.22,23 However, in 2012 the mortality rate for HF (12.9%) was higher than for diabetes (5.1%), asthma (0.8%) and COPD (7.5%), and the same trend was seen for rehospitalizations (14.6% for HF, 8.2% for diabetes, 5.1% for asthma and 14.0% for COPD).22

The readmission rate, particularly at 30 and 60 days, is increasing, which has serious economic and health care implications.22 Official data show that the cost of HF hospitalizations in Portugal in 1998 was approximately 24 million euros,24 similar to that of hospitalizations for COPD in the same year (23 million euros).25 Almost 20 years later, the growing prevalence of HF and the increasing sophistication of medical care mean that this figure is likely to be much higher.

Patients hospitalized for HF consume large quantities of resources, due to the high cost of the complex diagnostic exams, drugs, medical devices and surgical procedures that are often required.23 The cost of health care for HF patients is estimated to be well above what is allocated to them by the NHS.

The physical and psychological effects of HF also have important psychosocial implications, such as social isolation, anxiety, frustration and depression, with negative effects on the quality of life of both patients and their caregivers.26 There are no data available for the effects of HF on absenteeism and loss of productivity in Portugal, but this is another important aspect of the burden of HF with repercussions not only for the health system but also for society and the economy.

The basic problem with HF in Portugal is that there is no integrated approach on the part of those responsible for its management (Figure 1). The result is a lack of awareness of its importance and of its impact on the general population.

Figure 1.

Health care flows for the treatment of heart failure, showing the need for multidisciplinary teams to ensure the integrated management of the syndrome and provide health care in accordance with the international guidelines.1 HF: heart failure.

(0.5MB).

Official data on HF in Portugal are also limited and do not fully characterize the real course and management of the syndrome. The only study to date on the prevalence of heart failure in Portugal was published nearly 15 years ago,19 and there are no current data on changes in its prevalence and, more importantly, in its diagnosis and treatment. There are also gaps in the information on HF in the National Program for Cerebral and Cardiovascular Disease of the DGS, which does not provide numbers of rehospitalizations or of emergency department admissions for HF. In addition, the hospital production described in the DGS report is based on the coding of diagnosis-related groups (DRGs), which, as stated above, does not always reflect the real number of patients hospitalized for HF.21

Understanding of the actual importance of heart failure in the medical profession is patchy and there is little or no discussion of the role of the different specialties that deal with the condition. There is thus a need to organize the health care flows and to clearly define responsibilities, in order to ensure that optimal support is provided from the beginning to the end of the patient's journey through the health system.

The main players in the management of HF are GPs, cardiologists, internists, intensivists and nurses, but HF patients frequently present multiple comorbidities and therefore other specialists also have an important role in clinical management of the syndrome.

Since different specialists will be involved in the management of an individual patient, effective communication and collaboration between them and between the various levels of health care are essential. It has been shown that HF patients are better treated in integrated management programs and by specialized multidisciplinary teams (Figure 1).1,27

However, despite the existence of the online Health Data Platform (PDS), there are weaknesses in the flow of information between the different levels of health care. Communication between primary care centers and hospitals, particularly the cardiology and internal medicine departments, as well as between hospital departments, is clearly in need of improvement.

The lack of a properly organized integrated health care process for the management of heart failure is reflected in a wide range of deficiencies throughout the patient's journey through the health system (Figure 1).

• 1.

  The most urgent measure to improve the current situation would be to bring the different players together to form an alliance dedicated to making HF a health priority and improving its management. This alliance should include:

  • •

    regulatory and political bodies, especially the Health Commission of the Portuguese Parliament and the Ministry of Health, particularly the DGS and the Program for Cerebral and Cardiovascular Disease;

  • •

    scientific societies, particularly the Portuguese Societies of Cardiology, Internal Medicine, and Intensive Care;

  • •

    the Portuguese Medical Council and the Colleges of the various specialties involved in HF treatment;

  • •

    the Portuguese Nursing Council;

  • •

    HF patient groups;

  • •

    the media, as a means of informing and educating the population;

  • •

    the pharmaceutical and medical device industries, as partners in improving health care.

• 2.

  A national plan is needed for training health professionals in HF, particularly physicians and nurses, to encourage specialization in this area. HF should be included in the National Health Plan and clinical guidelines should be drawn up based on the ESC guidelines. The guidelines should be appropriate to the Portuguese context and should take into account the expected increase in HF prevalence in the coming years.

• 3.

  HF should be a priority in the next edition of the National Program for Cerebral and Cardiovascular Disease and in local health programs.

• 4.

  Diagnosis of HF should be improved by implementing digital diagnostics, and measurement of NT-proBNP should be made available in primary care and be reimbursed by the NHS.

• 5.

  A ‘Heart Failure Record’ should be introduced through which clinical information on each HF patient is recorded and can be accessed by all those involved in the care of HF patients.

• 6.

  Sharing of best practices should be encouraged between the facilities treating HF patients (cardiology and internal medicine departments and GPs).

• 1.

  An information and awareness campaign should be launched directed at the general population, patients, nurses and physicians. This could be linked to initiatives of the ESC and the Heart Failure Association, and of the Portuguese Society of Cardiology via its Working Group on Heart Failure. The campaign should include information on the European Heart Health Charter and the HeartFailureMatters website, aimed at patients and caregivers.

• 2.

  An integrated health care process for the management of HF should be established that is codified and applicable throughout the country, beginning with the creation of protocols designed to promote better integration between primary care and hospitals. This will require the setting up of a national network of multidisciplinary teams for the integrated treatment of HF patients. We also suggest the establishment of HF day hospitals and increasing the availability of cardiac rehabilitation programs for HF patients.

• 3.

  Performance indicators should be introduced for the medical care of HF patients, for both outpatient and inpatient care, and applicable to hospital departments and GPs. The performance measures recommended by the ESC and the ACC/AHA could be used for this purpose.29,30

• 4.

  The definition of HF and its associated costs in the relevant DRG tables, as well as those of HF day hospital sessions, should be revised.

• 5.

  Echocardiographic reports need to be standardized at national level in order to improve the quality of information available to physicians.

• 6.

  An effective palliative care network that includes HF patients should be implemented.

• 1.

  Electronic systems for sharing clinical information need to be improved, particularly the Health Data Platform (PDS).

• 2.

  Data collection should be systematized in order to update epidemiological data on HF, which will enable the progress of the disease to be monitored. Such data should include information on quality of life, using standardized questionnaires, and on the impact of the syndrome in terms of absenteeism of patients and caregivers.

The authors declare that no experiments were performed on humans or animals for this study.

The authors declare that no patient data appear in this article.

The authors declare that no patient data appear in this article.