Cardiological rehabilitation, prehabilitation, and cardiovascular prevention in adults with congenital heart defects: tasks and services of the German Pension Insurance—part 1: preventive cardiology and prehabilitation

Introduction

Congenital heart defects (CHD) are the most common and complex inborn cardiac conditions, which not only affect the quality of life of those affected but also are associated with high morbidity and mortality (1). Significant advances in medical treatment over the past decades have led to an increasing number of individuals with CHD reaching adulthood (2). However, these patients often face a range of cardiological challenges, including complications such as heart failure, pulmonary hypertension, arrhythmias, acquired cardiac and non-cardiac comorbidities, as well as psychosocial stressors, which necessitate specialized medical care and rehabilitation (3).

Optimized medical care for these chronically heart-ill patients, through targeted preventive, prehabilitative, and rehabilitative measures (4), seeks to reduce the high morbidity and mortality associated with CHD, thereby improving both short-term and long-term health outcomes for these patients (5,6). Preventive measures play a crucial role in addressing health impairments early on and helping patients to lead a largely self-determined life (7). Prehabilitation, on the other hand, aims to optimize the physical and psychological condition of patients prior to planned operations or interventions to increase their resilience and recovery outcomes (8). Rehabilitative measures are gaining increasing importance, as they aim to maintain or improve the general well-being of patients and support their participation in society and their reintegration into the workforce (9).

By addressing risk factors early and strengthening both physical and psychological resilience before and after medical interventions, such approaches can enhance functional capacity, reduce complications, and improve quality of life (5,6).

In Germany, the German Pension Insurance offers programs designed to enhance physical fitness, support mental well-being, and facilitate occupational reintegration for the general population (10). These programs could also be beneficial for patients with CHD if they take their specific needs into account. However, for this patient group, the available offerings in practice are often not specific enough, as disease- or heart defect-specific recommendations are lacking (11). Expanding access to individualized preventive, prehabilitative, and rehabilitative programs tailored to the complex needs of adults with CHD (ACHD) could therefore help bridge existing care gaps and promote sustained health stability in this patient population (11-13).

In light of these challenges, the article is structured into two parts. Part I addresses cardiological prevention and prehabilitation for ACHD and explores how the programs offered by the German Pension Insurance can support patients in these areas.

Part II will then address cardiological rehabilitation for ACHD and the related programs of the German Pension Insurance.

The methodology of this article is based on an extensive literature review and analysis of current research findings and publications on the effectiveness of prevention, prehabilitation, and rehabilitation programs for ACHD, with a particular focus on the services provided by the German Pension Insurance.

Fundamentals: CHD and their challenges in adulthood

CHD represents the most widespread and significant group of clinically relevant structural organ diseases that are present at birth (1,14). Each year, approximately 1.35 million children are born with CHD worldwide, affecting around 8,000 individuals in Germany (15,16). This corresponds to approximately one affected child per 100 live births in the western world (17).

The spectrum of CHD is broad, encompassing native defects, surgically or interventionally treated conditions, and, in some cases, partially repaired defects that require ongoing management by primary care physicians (PCPs) (18). CHD are commonly categorized into two main groups: acyanotic and cyanotic defects (19). Additionally, they can be classified based on severity into mild, moderate, and complex heart defects (Table 1) (20). The prevalence of ACHD varies widely in reported estimates, as it is often calculated using birth rates, birth prevalence, assumed survival rates, and data from large administrative databases (21,22).

The diagnosis and treatment possibilities of CHD are one of the greatest success stories of modern medicine. While only about 15% of children with significant CHD survived their early years in the 1950s, today, advancements in pediatric cardiology, cardiology, cardiac surgery, and intensive care ensure that over 95% of children with CHD reach adulthood in industrialized countries (1,2).

Despite significant reductions in mortality from CHD, morbidity remains high and is often overlooked. In this context, it is important to understand that a complete “correction” of CHD, leading to permanently normal heart function, normal life expectancy, and the cessation of further treatments, is only possible in exceptional cases (23,24). Almost all patients with CHD have therefore only undergone a “repair” and remain chronically ill despite treatment (24).

The cardiac sequelae and complications in ACHD are diverse, including heart failure, pulmonary vascular disease, arrhythmia, valve abnormalities, aortic diseases, and endocarditis, all of which require continuous and specialized care (3). For instance, ventricular arrhythmias, up to sudden cardiac death, may occur after the repair of Tetralogy of Fallot (25).

Another significant complication in ACHD is pulmonary hypertension, which often leads to a considerable reduction in quality of life and requires early detection and targeted therapy (26).

Additionally, the susceptibility to infectious endocarditis necessitates careful preventive measures (24). Acquired, partly age-related diseases of the kidneys and liver, systemic hypertension, and coronary artery disease further increase the complexity of care (24,27).

Along with the aforementioned cardiac sequelae and complications, psychological issues often present another challenge in the treatment of ACHD, as hospitalization in early childhood and chronic heart disease frequently have a significant impact on mental well-being. Many individuals struggle with poor body image due to visible scars from the heart surgeries they have undergone, which can lead to lower self-esteem. Inactivity is often accepted as normal, which further impairs both mental and physical health (28). It is therefore important to integrate these psychosocial aspects into the holistic care and rehabilitation of patients.

Furthermore, ACHD frequently face significant difficulties accessing cardiac rehabilitation programs, which reduces the active improvement of their physical fitness and quality of life (28).

Beyond personal challenges, CHD also places a substantial economic burden on society. For instance, lifetime costs for complex CHD are estimated at $3.35 trillion in the United States alone, including direct medical expenses, productivity losses from patients and caregivers, and mortality-related costs, which reflect the economic value of life years lost due to premature death. On average, individuals with complex CHD lose 31 years of life, resulting in an estimated $4.5 million in mortality-related economic loss per person (29).

Structured support concepts for ACHD

Specialized prevention, prehabilitation, and rehabilitation programs, each consisting of various components, are crucial for ACHD care, as they can enhance physical fitness and reduce the risk of cardiovascular complications. An interdisciplinary evaluation of the patient’s health is essential beforehand to ensure these programs are tailored to the specific needs, thereby offering long-term support in managing the challenges of chronic heart disease (30-32).

Comprehensive support should include several key components, such as continuous congenital cardiological support, physiotherapeutic measures to improve physical fitness, and psychological services to promote mental well-being. Individually tailored exercise plans and educational programs about the safety and benefits of physical activity are also important to strengthen patients’ self-confidence and encourage their active participation (28). In addition, nutritional counseling can help affected patients reduce their cardiovascular risk and effectively manage their risk factors (33).

Such a holistic approach aims to sustainably improve both the physical and mental health as well as the quality of life of ACHD (28).

The importance of cardiovascular disease prevention

Preventive medicine aims to reduce the risk of disease or halt their progression (34). As the treatment of CHD and the resulting long-term complications are associated with high costs, greater emphasis should be placed on preventive measures to improve the health status of this patient group, and various strategies for health promotion and disease prevention should be pursued (17).

In general, prevention is categorized into primary, secondary, and tertiary prevention (34). However, there are currently very few detailed recommendations available for CHD patients in this context.

Primary prevention focuses on preventing the onset of disease, such as through the improvement of environmental factors and health-promoting behaviors (34). In the context of CHD, this means preventing the development of heart defects. An important preventive approach is rubella vaccination, as an infection during pregnancy can lead to severe malformations and, consequently, CHD (35). Furthermore, it is being discussed whether other measures, such as the use of folic acid during pregnancy, could also contribute to the prevention of heart conditions (36).

Secondary prevention involves measures for the early detection of diseases, such as through screening programs and early treatment approaches. It specifically targets individuals with risk factors for, but without the resulting disease so far (34). As part of such measures, heart defect-associated residues and sequelae, such as cardiac and non-cardiac comorbidities, should be identified in a timely manner to initiate appropriate treatment and prevent disease progression (37,38). Treatment approaches include, for example, the use of statins for elevated blood lipid levels, antihypertensive medication for hypertension, as well as lifestyle modifications such as weight management, sodium reduction, and stress management to slow disease progression and prevent relapses (39).

Tertiary prevention, which is partly equated with rehabilitation, aims to alleviate the consequences of the disease, prevent disease recurrence (relapse prevention), and avoid disease progression. Various measures are applied, primarily aiming to improve physical performance and fitness (34).

Secondary and tertiary prevention are becoming increasingly important for CHD patients, as they now often reach an advanced age in adulthood (37,38).

Health counseling is also a central component of evidence-based prevention strategies for ACHD, aiming to educate patients about the importance of a healthy lifestyle (40). The American Heart Association even adopts the concept of “primordial prevention”, which aims to prevent the development of risk factors from the very beginning, in addition to the concept of “ideal” cardiovascular health (41).

To prevent cardiovascular complications and reduce the risk of heart disease, the consistent management of risk factors such as overweight, physical inactivity, hypertension, elevated blood lipid levels, and diabetes mellitus is crucial. It is well known that a balanced lifestyle, including appropriate physical activity, good nutrition, weight management, and stress reduction, plays a key role in reducing the risk of cardiovascular diseases and enhancing quality of life. Health programs should further incorporate counselling on smoking and alcohol cessation, as both contribute to lowering the risk of postoperative complications such as wound infections (42,43).

A study in CHD patients showed that individuals with complex CHD, such as those who have undergone palliation with a Fontan circulation, are often overweight (44). By implementing targeted measures to encourage healthy eating habits and appropriate physical activity, these patients can also be actively involved in improving their cardiovascular health, preventing acquired cardiovascular diseases, and sustainably increasing their physical resilience and quality of life (45).

Further, PCPs play a crucial role as key stakeholders in the long-term management of ACHD by facilitating early risk detection, coordinating multidisciplinary care, and promoting preventive measures. Given the challenges in accessing specialized ACHD care, PCPs help bridge this gap by ensuring continuous monitoring, patient education, and timely referrals to specialists. Strengthening PCPs involvement in preventive cardiology and rehabilitation has the potential to enhance patient outcomes, reduce complications, and improve overall healthcare efficiency (3).

The role of the German Pension Insurance in preventive cardiology for ACHD

The German Pension Insurance plays an important role in preventive cardiology, offering programs that help to counteract health impairments at an early stage, secure employability, and prevent the development of chronic diseases. The programs of the German Pension Insurance are tailored to the individual needs of the insured and are carried out in various facilities responsible for organizing and implementing them (7). To apply for a preventive service, initial health impairments must be present, and the applicant must have paid mandatory contributions to the German Pension Insurance for at least 6 months and must not be unemployed (46,47).

Prevention programs include activities like strength training and job-specific exercises, such as pushing and lifting, which are tailored to the specific occupational requirements. In addition, special exercises for sedentary activities are integrated to improve posture and stability. Other offerings include Pilates and yoga to enhance body awareness, as well as training with resistance bands and other small equipment (7).

Nonetheless, it is important to emphasize that the preventive services provided by the German Pension Insurance are not specifically tailored for ACHD, but rather represent general offerings available to all insured individuals with health impairments (7,11).

Evaluation of preventive services and their further development

The results of the German Cardiovascular Prevention Study showed that preventive measures, such as better nutrition and increased physical activity, can significantly reduce cardiovascular risk factors like hypertension, total serum cholesterol, and smoking. This highlights the importance of preventive measures in reducing the risk of chronic diseases and improving overall health (48). However, compared to other industrialized countries, Germany performs worse in terms of improving life expectancy, an objective measure of a population’s health, largely due to deficiencies in primary healthcare and disease prevention. Therefore, it is necessary to further expand preventive measures and optimize the early detection of risk factors (49).

Implementing preventive measures for ACHD presents several challenges, including limited access or use of specialized care, although broadly available in Germany, and thus difficulties in ensuring long-term adherence to qualified treatment. Additionally, the lifelong nature of CHD management requires sustained engagement with preventive strategies, yet adherence can be hindered by factors such as lack of awareness, psychosocial barriers, and financial constraints (50,51). Furthermore, the heterogeneity of CHD means that preventive recommendations must be highly individualized and customized for the CHD, making standardized approaches difficult to implement (18).

Another challenge in ACHD management is that many affected patients are not sufficiently aware of and informed about their health condition and its consequences, particularly regarding the need for lifelong follow-up. Many are also not sufficiently informed and/or unaware of existing ACHD health care facilities, despite the high rate of cardiac and non-cardiac co-morbidities and the considerable need for medical counselling among ACHD (50).

Addressing these challenges requires improved patient education, enhanced coordination between primary care providers and specialists, and the development of accessible, long-term support programs tailored to the unique needs of ACHD (52).

The role of technology is also becoming increasingly important in the context of preventive, prehabilitative, and rehabilitative measures to improve long-term cardiovascular health and quality of life in ACHD (53). Telemedicine and telemonitoring using wearables are valuable tools in this regard. Telemedicine facilitates remote consultations and ensures continuous follow-up and early intervention, which can be crucial given the chronic nature of ACHD. Wearable sensors such as smartwatches and fitness trackers enable real-time monitoring of vital signs, activity levels, and potential arrhythmias. These technologies support self-management, promote patient engagement, and contribute to the early detection of cardiovascular risks (53,54).

Currently, the services provided by the German Pension Insurance are primarily available to working individuals (46), which may limit access for those with severe CHD who are unable to participate in working life (55). However, in Germany, other insurance providers also offer preventive services, with responsibility determined by underlying causal criteria. The German Pension Insurance is primarily responsible for preventing long-term work disability and promoting occupational reintegration, making its services particularly relevant as growing numbers of ACHD reach working age and employment becomes a central aspect of their lives (56,57).

The Robert Koch Institute recommends, in accordance with the Prevention Act (PrävG) of 2017, cross-sector coordination of preventive measures. This includes collaboration between various sectors, such as health care, education, social services, and others, to ensure effective and sustainable prevention (58).

The German Pension Insurance is aiming to expand its preventive offerings to reach a broader target group and actively promote the participation of insured individuals. Strengthening cooperation and networking with other stakeholders in the healthcare system is also a key component to ensure seamless care. A particular focus is further placed on optimizing care for individuals with mental health conditions. These strategic approaches aim to improve the quality of healthcare services and sustainably enhance the satisfaction of insured individuals (10).

Prehabilitation in adults with congenital heart disease

Prehabilitation refers to a structured, individualized, multimodal training program that is used before planned surgical procedures to minimize the risk of complications during and after the surgery and to improve the physical fitness of patients with impairments. Such a program typically starts a few weeks before the procedure (8). Its key components include exercise and physical therapies to increase performance, optimization of nutrition, psychosocial support, and the promotion of motivation. An important aspect is also the reduction of risk factors, such as smoking (8,59,60).

A systematic review by Steinmetz et al. showed that patients substantially benefited from exercise-based prehabilitation before heart surgery. These specialized programs led to a significant improvement in the 6-minute walk test and reduced the length of hospital stays compared to the control group. A subgroup analysis also revealed a significant risk reduction of postoperative atrial fibrillation in patients under 65 years of age (61). Based on these results, a large, randomized controlled study (PRECOVERY), funded by the Joint Federal Committee, is currently investigating whether a 2-week prehabilitation program has a positive impact on the surgical outcomes of older patients following heart surgery (62).

Furthermore, studies show that preoperative interventions such as immunonutrition and inspiratory muscle training also have positive effects on hospital stay and postoperative complications (42). Immunonutrition refers to the use of specific nutrients to selectively modulate the immune system and inflammatory processes. Substrates such as arginine, omega-3 fatty acids, and, if necessary, glutamine are administered in higher doses to reduce infections and shorten the duration of hospital stays, particularly after surgeries (42,63). Additionally, smoking cessation programs led to a significant reduction in wound infections (42). In line with these preoperative interventions, Parker et al. showed that preoperative stress management leads to fewer mood swings and a higher quality of life in the immediate postoperative phase, compared to patients without stress management (64).

Recent data from the Digital Cardiac Counseling Trials indicate that patients who were included in a digital “prehabilitation” program before cardiac surgery experienced a significant reduction in major adverse cardiovascular events compared to patients who did not participate in this intervention (65).

The potential of the German Pension Insurance in prehabilitation for ACHD

Currently, the German Pension Insurance does not offer prehabilitation services before cardiac surgeries. However, integrating prehabilitation into the range of services could represent a promising expansion of the existing preventive and rehabilitative offerings. Prehabilitation offers significant benefits for both patients and the healthcare system. By specifically improving physical and mental health before surgery, postoperative complications can be reduced, recovery times shortened, and long-term functional prognosis improved (42,66). By reducing postoperative burdens and the need for readmissions and emergency visits, prehabilitation contributes significantly to lowering healthcare costs. Although prehabilitation incurs its own costs, these are generally lower than the costs associated with complications and longer hospital stays. As a result, it enables more efficient resource use in healthcare and improves care sustainability (67). The introduction of prehabilitation could thus not only enhance patient care but also make a lasting contribution to cost optimization.

Despite its clear benefits, the implementation of prehabilitation faces several practical challenges. These include the complexity of hospital systems, a lack of human resources, the requirement for additional funding, and the difficulty in developing standardized programs. Other significant barriers include insufficient time for prehabilitation before surgery, patients’ struggles to understand or engage with exercise information, and communication challenges between healthcare providers (68,69).

The ideal cardiac prehabilitation program should be individualized and patient-centered, incorporating interventions from all three main components—exercise, nutrition, and psychosocial support. This holistic approach can strengthen the body’s physiological reserves, leading to better recovery and overall improved outcomes after the procedure (70). The German Pension Insurance already offers a wide range of preventive measures aimed at promoting more physical activity, supporting smoking cessation, and optimizing nutrition (7). These existing programs could be strategically utilized to develop prehabilitation programs for CHD patients, enabling optimal preparation for upcoming surgical procedures.

Conclusions

The German Pension Insurance plays a pivotal role in improving the long-term medical care of ACHD. Given the increasing importance of employment in the lives of ACHD, its focus on preventing long-term work disability and promoting occupational reintegration makes its services especially relevant. Nevertheless, additional support structures beyond the German Pension Insurance are needed to ensure access to preventive and prehabilitative care for non-working ACHD.

Currently, preventive and prehabilitative measures in ACHD care remain underutilized due to absent standards, limited resources, poor integration into routine care, and financial as well as technological challenges. Inadequate coordination within the healthcare system further hinders broader implementation.

It is essential that the German Pension Insurance continues to develop and fund specialized programs that address the medical, psychosocial, and occupational needs of patients with CHD. A promising approach to advancing care would be the introduction of prehabilitation programs, which would specifically prepare patients prior to planned surgical interventions. Programs like PRECOVERY could drive a shift toward integrating prehabilitation as a standard practice in healthcare.

Through close collaboration between the German Pension Insurance, health insurers, the pension fund, doctors—especially ACHD specialists—medical professionals, and patients, optimal healthcare can be ensured, improving the quality of life for ACHD sustainably.

Other countries can benefit from the German integrative approach by promoting interdisciplinary collaboration between social insurance providers, medical professionals, and rehabilitation centers to ensure comprehensive care for patients with CHD. Additionally, these countries can establish specialized care structures tailored to the unique needs of ACHD. The implementation of continuous aftercare systems would also guarantee lifelong support, enabling early detection and treatment of complications. By adopting these measures, the quality of life for ACHD can be sustainably improved worldwide.

Further studies are needed to determine how ACHD can be better reached and supported through tailored preventive and prehabilitative programs. Specifically, research should focus on identifying the types of information that ACHD require, such as disease-specific education, available treatment options, and the long-term management of comorbidities. It is also crucial to examine how such programs can be implemented effectively in both outpatient and inpatient settings, ensuring accessibility and adherence. Additionally, exploring barriers to participation, including geographical, socioeconomic, and educational factors, will help refine strategies to enhance patient engagement and outcomes. By addressing these gaps and refining care strategies, we can ensure that ACHD receive the comprehensive, individualized care they need to lead healthier, more fulfilling lives.

Acknowledgments

The present work was performed in fulfillment of the requirements for obtaining the degree “Dr. med” at the Friedrich-Alexander-Universität Erlangen-Nürnberg.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Cardiovascular Diagnosis and Therapy for the series “Current Management Aspects of Adult Congenital Heart Disease (ACHD): Part VI”. The article has undergone external peer review.

Peer Review File: Available at https://cdt.amegroups.com/article/view/10.21037/cdt-2024-691/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://cdt.amegroups.com/article/view/10.21037/cdt-2024-691/coif). The series “Current Management Aspects in Adult Congenital Heart Disease (ACHD): Part VI” was commissioned by the editorial office without any funding or sponsorship. H.K. served as the unpaid Guest Editor of the series. All authors received grant for scientific research regarding rehabilitation in ACHD from the “Deutsche Rentenversicherung Rheinland”. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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