Necessity of Implementation of Guidelines for Comprehensive Cardiovascular Rehabilitation of Patients with Congenital Heart Disease

More than 50 years ago the concept of Cardiovascular Rehabilitation (CR) was given in the world of medical sciences and established by the European Office of the World Health Organization (WHO), its main postulate is to diminish as much as possible the unfavorable physiological, social and psychological consequences of cardiovascular diseases [1]. 

The concept of CR is also applicable to patients with Congenital Heart Disease (CHD). These conditions require new ways of doing and thinking in order to minimize the sequelae that appear in patients as a consequence of these conditions. The increase in survival of people with CHD is remarkable and requires new forms of treatment, organization of care services, and modalities to provide high quality and warmth services, not only to guarantee the quantity of life but also the quality of life adjusted to the types and characteristics of the disease, to the real possibilities and limits of the heart, as well as to the stages of development through which these patients pass in the evolutionary cycle of life. 

Guidelines or protocols are required to govern the CR processes of congenital heart patients, and to include in their construction the physical, psychological, and social variables that are associated with these patients, frequently entailing emotional, cognitive, and behavioral alterations of varying degrees of severity that can begin in childhood and transcend to the rest of the stages of development.  

However, to date, there are few guidelines or protocols for the rehabilitation process of these patients, and those that do exist are not homogeneous and refer mainly to the use of exercise to improve the physical condition of patients with heart disease [2]. In addition, it is recognized that worldwide there are few centers that provide CR services to this population, especially in pediatrics [3]. 

A review of the 2010 and 2020 Spanish Clinical Practice Guidelines on CHD shows that their objectives are aimed at aspects of clinical management in adults [4,5]. The CR of congenital heart disease is not included either in the CR Guidelines of the Spanish Society of Cardiology or in the current ones [6], despite the fact that the scientific evidence in this field recognizes the multiple physical and socio-psychological effects on those who are carriers; and the exposure of congenital heart disease patients to standard or traditional cardiovascular risk factors that favor the development of acquired heart disease [7,8]. Therefore, CR programs for this type of patient also require actions that benefit lifestyles and heart-healthy behaviors from childhood. 

In the opinion of the author of this letter, comprehensive intervention should be applied in all phases of the rehabilitation process through which the patient passes from birth to the moment of death, which often occurs at an advanced age. It presupposes the diagnosis and individualized intervention not only of biological aspects but also of the psychological sphere; and it also requires family intervention aimed at fostering in parents' and caregivers' beliefs adjusted to the type of disease of their children, management and appropriate educational methods to counteract maladaptive behaviors and other psychological alterations. 

At the same time, parents should be taught to manage their own emotions given the emotional connotation and repercussions that these conditions have on them and on family dynamics. 

Therefore, it requires exhaustive comprehensive diagnoses, collegiality among specialists in the work team, and a high level of professional preparation that contributes to improving all the standards of living of the patients as far as their real possibilities allow. The state of the art on the consequences of CC on the psychological life of heart patients is extensive [2,7,8] but they are not always taken into account when talking about their rehabilitation. 

It is important to teach them to recognize their negative emotions and train them to manage and self-control them, prepare them for the subsequent stage (transition) based on the psychological and biological characteristics inherent to their age, adapt their expectations and goals according to their interests and limitations to avoid frustrations, encourage therapeutic adherence, responsibility for their self-care, and ensure the healthy development of their personality and personal wellbeing in accordance with their individuality.  Resilience and coping in accordance with the particularities of the disease must be cultivated and close alliances between the patient, the health care team, the school, and the family must not be lacking. 

The psychocardiological approach calls on the scientific community involved in assisting these patients and their families to promote and develop CPGs on CR in patients with CHD based on the best evidence, without forgetting the three dimensions of this concept: physical, psychological, and social aspects.

1. https://apps.who.int/iris/handle/10665/40577.
2. Rodríguez T, Nohaya A, González N (2022) La intervención psicocardiológica en la rehabilitación cardiovascular de niños escolares con cardiopatías congénitas: Una revisión sistemática. Rev Españ Rehabilit 56: 353-363.
3. Miranda I, Ilarraza H, Rius MD, Figueroa J, De Micheli, et al. (2012) Rehabilitación cardiaca en cardiopatías congénitas. Arch Cardiol Mex 82: 153-159.
4. Baumgartner H, Bonhoeffer P, De Groot N, De Haan F, Deanfield JE, et al. (2010) Guía de Práctica Clínica de la ESC para el manejo de cardiopatías congénitas en el adulto (nueva versión 2010). Rev Españ de Cardiol 63: 1484.
5. Baumgartner H, De Backer J, Babu-Narayan SV, Budts W, Chessa M, et al. (2021) ESC Scientific Document Group 2020 ESC Guidelines for the management of adult congenital heart disease. Eur Heart J 42: 563-645.
6. Nuevas Guías 2021 de la Sociedad Europea de Cardiología (ESC).
7. Troost E, Roggen L, Moons P, De Meester P, Van A, et al. (2019) Advanced care planning in adult congenital heart disease: Transitioning from repair to palliation and end-of-life care. Int J Cardiol 279: 57-61.
8. Bellinger D, Newburger J (2010) Neuropsychological, psychosocial, and quality of-life outcomes in children and adolescents with congenital heart disease. Progress in Pediatric Cardiology 29: 87-92.