The treatment and follow-up of patients with heart failure remains a challenge in practice. Heart failure is usually a chronic disease. The disease course is characterized by periods of increase in heart failure symptoms (cardiac decompensation, acute heart failure) and periods of stable clinical condition after treatment (chronic heart failure). The aim is to achieve the best possible symptom control, preferably without fluid retention (euvolemia) and with stable vital parameters (weight, blood pressure and heart rate). Numerous provoking factors or triggers can disrupt this balance and lead to an increase in intracardiac pressure and/or fluid retention (heart decompensation or acute heart failure), with or without the need for hospital admission. The disease course of these patients is therefore characterized by fluctuations in fluid balance, weight, blood pressure, heart rate, renal function, ion balances, etc. Developing cardiac decompensation is often manifested in advance by changes in symptoms and vital parameters. Monitoring these parameters at home and timely detection of changes in these parameters can lead to timely adjustments to therapy, which can sometimes prevent further deterioration and hospital admissions.
In addition, heart failure patients often have many other comorbidities that, if not detected and properly treated, will lead to increasing morbidity, hospitalizations or even mortality. Possible new problems that may arise during the follow-up of heart failure patients include hypotension, cardiac arrhythmias (atrial fibrillation, bradycardia, etc.), dehydration, renal insufficiency, electrolyte imbalance, anemia, iron deficiency, etc. New problems must be detected in a timely manner and addressed correctly.
Ultimately, heart failure often leads to a deterioration of the patient's cardiac and general condition. The speed of this varies greatly between individuals.
The treatment of heart failure continues to evolve and becomes more extensive and complex. The European Society of Cardiology (ESC) guidelines are regularly updated based on new scientific insights and treatments. These guidelines are written by and for cardiologists. However, the same heart failure patient is usually monitored and treated by several doctors. Not every doctor can keep up to date with the most recent guidelines on the treatment of heart failure. Registries have shown for years that the implementation of international guidelines in often remains substandard in practice. Implementing these guidelines in practice is often challenging and depends on many factors (education of doctors, other healthcare providers and patients – blood pressure, heart rate, kidney function, etc). Patients with heart failure with reduced LVEF (HFrEF) in particular should therefore be followed up by a cardiologist with additional expertise in the treatment of heart failure. In addition, a well-organized multidisciplinary approach is needed, in which all healthcare providers follow the same guidelines. There is a need for an information source that can bring the ESC guidelines and therefore the current optimal treatment of heart failure to all doctors in an accessible, understandable, user-friendly version. Practical advice must also be provided on how to tackle certain problems in these patients (what to do in case of, for example, renal insufficiency, electrolyte imbalance, cardiac decompensation, hypotension, dehydration, etc.). Doctors, both in the hospital and outside, can then quickly receive reliable advice if they have questions.
However, the patient is normally not in the hospital most of the time. It is therefore necessary to create seamless, high-quality continuity between healthcare providers at home and in the hospital. This transmural care is essential from the diagnosis of heart failure until the end stage of the disease. There is a need for concrete advice with practical instructions for all doctors involved in the follow-up of heart failure patients, ranging from cardiologists, general practitioners, geriatricians to every doctor who treats the patient. The role of the general practitioner must be clearly defined, as should that of the heart failure nurse and any telemonitoring.
Depending on the stage of the disease, there are specific points of attention in patients with heart failure.
Read: Follow-up of a heart failure patient.
A distinction must be made between three phases :
1) The transition phase.
These are the first weeks after a hospitalization due to heart failure. The patient's condition is not yet stable and the treatment is often not yet optimal. Close monitoring and titration of the medication is necessary. During this phase there is an increased risk of hospital readmission or death.
2) The chronic phase or plateau phase.
After stabilization, the patient should be closely monitored to ensure that:
- The clinical condition remains stable.
- The treatment remains as optimal as possible.
- New problems are quickly detected and treated correctly.
- Disease progression to advanced heart failure is detected in a timely manner and treated correctly.
3) Advanced heart failure or terminal heart failure.
In this phase, heart failure becomes life-threatening and the prognosis is poor. It must then be determined whether or not the patient is still eligible for heart transplantation and/or LVAD. If this is no longer the case, appropriate supportive, palliative measures should be taken with an emphasis on the patient's comfort.
The organization of the follow-up and care of heart failure patients is complex and often challenging in practice, because the disease course of heart failure can be very dynamic and because many heart failure patients have a different profile. New problems can always suddenly arise, both cardiac and non-cardiac. As a result, the therapy must always be adapted to the evolution and parameters of each specific patient (blood pressure, heart rate, fluid retention or not, renal function, ionogram, whether or not AF, etc.). Care for heart failure patients is therefore a continuum.
To achieve this continuity of optimal care, there are 3 important pillars :
- Heart failure clinic: This is a part of the cardiology service that strives for multidisciplinary and optimal follow-up and treatment by a cardiologist/heart failure specialist with a central role for the heart failure nurse.
- Intramural care pathway: These guidelines aim for optimal treatment and planning of the follow-up of heart failure patients during a hospital admission.
- Transmural care pathway: These guidelines aim for optimal treatment and follow-up during the transition from the hospital to the home situation. This also includes treatment and follow-up at home (extramural care).
The functions of these 3 pillars overlap and are complementary. Together they form a continuum and provide high-quality, structured care for the heart failure patient.
Not only doctors play a crucial role in the follow-up of patients with heart failure. After all, the patient is usually not in the hospital and not at the doctor's office. However, the patient himself and family or friends are always present with the patient. They are therefore crucial in the follow-up. Sufficient education and practical guidelines regarding monitoring of parameters (weight, blood pressure, heart rate), symptoms, medication use, dietary advice, living with heart failure, etc. are therefore very important, so that changes in the clinical condition can be detected and treated more quickly and so that the patient can respond more quickly and deals with his illness correctly. This self-care or self-management with understanding your own condition, managing or checking it yourself and realizing when you need to call for extra consultation or help is essential.
In addition, these patients are often monitored by other healthcare providers such as nurses, other healthcare professionals, pharmacists, physiotherapists, dietitians and psychologists. It is important that each healthcare provider involved monitors any alarm symptoms, lifestyle, medication use and other matters and that they all provide the same correct advice. Education and concrete guidelines for all these healthcare providers are therefore also necessary.
The severity of the disease, its chronic nature with frequent exacerbations and its multi-organ involvement require close cooperation between the various healthcare providers at home (extramural care) and in the hospital (intramural care). Moreover, it has been shown that such a heart failure care program offers clear added value in the successful treatment of heart failure with an improvement in the quality of life and the prognosis of the patient with fewer hospital admissions and a better life expectancy. A reduction in hospitalizations also results in significant cost savings for society.
International guidelines therefore recommend that heart failure patients are followed within a multidisciplinary care program that places the patient at the center and where the patient is treated by well-trained, competent healthcare providers and where patient self-management is encouraged (ESC guidelines 2021, class IA recommendation). Such a program should contain the following:
- Optimal drug therapy, devices (ICD, CRT, pacemaker, etc.) and lifestyle adjustments.
- Education of the patient and his environment. Easy access to medical information about heart failure.
- Psychosocial support.
- Follow-up after discharge from the hospital by, among others, the general practitioner, home care nurse, cardiologist and/or a heart failure nurse. This is done by organizing regular clinical re-evaluations during consultation and, if possible, by telephone support from the heart failure nurse and/or telemonitoring.
- Easy access to these healthcare providers, especially if signs of cardiac decompensation or other alarm symptoms occur.
- Correct follow-up, interpretation and intervention in case of unexplained changes in weight, blood pressure, heart rate, functional status, abnormal blood results, sleep problems or psychosocial problems.
- Access to advanced therapies (LVAD, heart transplant) or palliative therapy in progression to end-stage heart failure.
So much can go wrong in a heart failure patient, making heart failure par excellence a disease that deserves a care pathway. This was already recognized in a consensus text from the RIZIV on 27-11-2008. In 2024, this is still not the case. Many hospitals have been conducting their own projects for years to improve heart failure care. However, these remain local and incomplete. There is therefore a need for a uniform heart failure care path in which all aspects of the multidisciplinary follow-up have been developed with the aim of structuring and making the increasingly complex care uniform.
